Can I Delay Treatment for Rheumatoid Arthritis? part 1
Should we wait to treat Rheumatoid Arthritis?
That depends; can an ostrich heal thyroid disease?
One of the things that makes us warriors is our desire to survive. We fight Rheumatoid Arthritis because we want to outlive every scheme which RA has in store for us. We are determined to live the fullest and longest and happiest life that we can! That is what drives me to write this blog.
Recent posts have examined the role of doctors in enabling RA-ers to get proper diagnosis and begin treatment. Doctors do have a critical role. However, so do patients.
Can we talk about delaying treatment for Rheumatoid Arthritis intentionally?
If you or someone you love is delaying treatment, I hope something I say will help you to consider the decision carefully. First, let me tell you a story…
When I was 15 years old, I became ill with a type of autoimmune thyroiditis. It causes acute swings of thyroid hormone in the bloodstream. Alternately, it is extremely low or extremely high.
Lots of entertaining trips to hospitals to meet doctors with cool names finally brought an answer. Careful monitoring of medication finally brought stabilization. However, when you are young, you are invincible.
You have probably guessed it by now – I did go off the reservation, medically speaking. I was convinced that I could be healthier without medication in my body. I would remain healthy by dedication – mainly eating well, clean living, and exercising. I was determined.
I did not understand all that the thyroid does for basic existence. I did not understand how the disease worked either. For example, there were remissions or lulls in the activity of the disease during which I would seem perfectly fine.
But I was not fine. I ignored symptoms because I did not want to be a sick person, dependent upon medication for the rest of my life. I also did not like the look on people’s faces when I tried to tell them about thyroid disease.
Eventually, I broke down and saw an endocrinologist when I wanted to have a baby. I wanted to avoid a miscarriage, which is common with thyroid disorders. Until then, I had carefully ignored symptoms and skillfully managed them since they had not been severe.
However, the doc did not deem my story credible and he proclaimed my thyroid to be fine. I really wanted to hear that, so I tried to believe it. Maybe the military doctors at Bethesda Navy Medical Center and Walter Reed Army Hospital were all wrong. Only the President of the United States is treated there – probably inferior doctors…
The next ten years brought me 3 children and a few miscarriages in between. By now, it was fear and lack of finances which motivated my denial more than stubbornness. Then, my fourth child was born.
I never regained strength after the birth. Instead, I slipped more every day. Friends helped me a great deal. And I made my most valiant effort to be healed with nutrition. But even healthy food does not contain thyroid hormone! And no vitamin will make your body produce it!
Over months, I became extremely weak. All of this determination that I have – I was using every last bit of it to do the bare minimum to take care of my kids. Some people close to me were telling me to snap out of it. If resolve could cure, I would have been fine.
I am including very few details here of the hell of that year. My thinking became so slow that I could not read. I was trying to read a stack of thyroid abstracts that my dad had printed out. I sat for hours every night with a highlighter. By the time I would finish a line, I would have forgotten the previous one and go back.
Finally, I was convinced my illness had to be thyroid and I got myself to the health department – about an hour from home. I sat for hours in the hallway with my 4 little ones. I was still determined as ever, just determined to get treated this time.
My TSH was 478 by then – normal is about 2. (They put it in the record books!)I remember them telling me I should have been in a coma and marveling that I had been driving. My organs had begun to shut down. My cholesterol was 240.
After about a year, I recovered fully.
Some things changed after that:
- I know an awful lot about thyroid topics now.
- I know I had looked at the medicine the wrong way. I am not sad that I will need it for the rest of my life. I am glad that I have it so that I CAN HAVE THE REST OF MY LIFE.
My mother used to tell me never to be an ostrich. An ostrich buries its head in the sand when danger is near. That way the danger is gone. Not.
*Tomorrow’s question: Should we wait to treat Rheumatoid Arthritis?
Recommended reading:
- 3 Reasons to Begin Using Rheumatoid Arthritis Medicines to Fight the Disease
- Do You Take Methotrexate for Rheumatoid Arthritis?
- Mortality and Rheumatoid Arthritis
Thanks for sharing. Do you think the thyroid and RA are connected in anyway?
Other than the fact they both live inside of me? hahaha. kidding…
Yes, they are both autoimmune diseases. Researchers say if you have one, you are more likely to have another. I am a lucky one. With a few. Hahaha.
OH, me too! After birth of 1st child. Much better on meds. x
I too learned the hard way that delaying treatment. I stopped treatment for my RA for 15 years as I was mistakenly told I was in remission–for good. By not staying on treatment, or following up on new research (as this was back when DMARDS weren't made yet) into the disease has cost me permanent lung problems as well as permanent voice loss. I don't recommend paying ostrich to anyone. 🙂
"I know I had looked at the medicine the wrong way. I am not sad that I will need it for the rest of my life. I am glad that I have it so that I CAN HAVE THE REST OF MY LIFE."
Thanks, Kelly. This is a good reality check/attitude adjustment for me!! Now if I can only remember this every day… 😉
Caysea
Thank you Caysea.
Hi,
I read this and so much of it reminded me of me, even my husband said how similar. My under active thyroid kicked in to the point of being noticed just after mmy daughter was born, I was put on Prozac to calm me down, has they thought it was post natal, it wasnt until after I got aggressive, (something which I had become apparently) that the doctor did a blood test, I was sent to the hospital the following morning to see a specialist, or said he has never seen a case so bad, I was also like you on the verge of a coma, and that I had got Myxodemia, no surprise I argued with him. However as soon as treatment was started I started to feel better, it took two years for them to find the right dose, which at the time was 300mg, unfortuanetly, I have no memory of that time, and missed my son and daughter until my son was nearly 5 and my daughter nearly 3.
Im interested to read the rest of your blog, has I also have rheumotod athritis, and find it hard to get info from my doctors who just give pills and say they will help. i wish you all the very best, and a superb blog. x
Hi Carol, Thanks for your good message. I’m so glad you were ok! I haven’t met anyone who was as sick as I was before w/thyroid. How did family members react? Was everyone surprised that was the cause of your illness? Since I’ve been had thryoid disease 30 years, I’ve had to be a little creative w/ treatment. Glad I later found 1 really smart doc who did keep up w/ the newest approaches. So many are treated by the old theories, whether its tsh levels or t3 levels… Maybe this taught me to learn for myself like I now have to w/ RA?
Hi kelly,
My poor husband had to put up with so much, I literally had gone mad through my thyroid, and having a baby and toddler, it was exceptionally hard for him, yet he he was brilliant. My parents were also fantastic, they would give my husband a break from me, because I was so aggressive and paranoid apparently. It was such a relief to find out it was treatable to them, that they said they could see the change as I started to recover, my eyes which apprently had looked almost sharklike and dead, suddenly started to regain their sparkle. I do admit to thinkign that my thyroid was the one that broke my immune system, and it seems now at least once a year they find something else wrong with me, but Im a fighter, and surrounded by wonderful family that help. Thankyou for such a wonderful blog to read. x
You are welcome. And thank you for letting me get to hear your story too. My response was different. I wasn’t aggressive – I was more lethargic. I had 4 little ones & I became listless. The children needed me & I was all they had. It really aggravated other family members who thought it was just a depression or giving up on my part. So they did not help me in any practical ways. They just kept telling me to suck it up & get more accomplished. I like to say, I couldn’t get into 2nd gear. I had always been a 5th gear person…
Isn’t this interesting, Carol? I never thought my thyroid broke my immune system since my thyroid & RA symptoms both go back to about age 13-15. Also, my grandparents had Autoimmune issues, one of them w/ RA. So, I guess it was in my genes & studies show growing up w/lots of cigarette smoke was probably a trigger. It was the 60’s.
Thanks to you for sharing.. we all seem to have a little ostrich time in out lives.. but as we all find its all still there.. im glad you survived this ordeal. four children depending on you you really need to take care of YOURSELF
I try now, Shannon. RA was a whole new deal. It became full blown about 8 yrs later. A whole new “mystery” to solve for me. 😛
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I just started reading your site. I have really enjoyed reading so far.have been fighting ra for about 8 years. Have been doing metho.since Dec 2012. Your site has really helped exspecially with the mental parts. I do not feel so insane.I look forward to more info and time.
Hello Sherly and anyone else,
I have been diagnoised with RA for almost 3 year. Probably had it after or during my second pregnancy. I had taken medicine originally but stopped because it was making me sick and my husband and I wanted another child. Well 2 years have passed and I saw my RA dr last week and he said RA was active and progressive and wants me to start metho is six week or so. I’m still not sure as the idea of not having another child makes me so sad even though we have been trying by my pain has increased. If anyone could help with why they decided to start metho that would be appreciated. I’m very scared and feel alone.
Thanks…Krista
Hi Krista,
I too was very scared to start Methotrexate, but my doctor convinced me that being proactive is such an important part of treating this disease. The side effects went away after a few months and combined with Humira I am in alm
Almost complete remission. I don’t post too often in here but wanted to encourage you to Perdue treatment now. Once you are on the men’s you can think about having another child. Sorry about the split post but my phone is doing weird things. It CAN get so much better! Think what a better Mom you’ll be to your children without all this pain!
Im only 19, so I cant quite identify with you on having children. I was, however, on methrotrexate for a majority of my life. It was not always fun, but I will have to say the methotrexate helped. It eventually was not enough for me, but it did help while I was on it. Everything can be very overwhelming at times but please know that you are not alone. You can talk to me if you want to, my email is gerberm11@students.ecu.edu 🙂 Goodluck with everything and remember to try and stay positive 🙂
Hi Krista –
First, I’m so sorry you feel scared and alone – but know that you are NOT alone. RA Warrior is a fabulous community. I was just recently diagnosed with RA myself and started on methotrexate. I’m still wondering if it’s the right decision for me and I continue to monitor how I react to it all. I started it because I was in a great deal of pain from my flare-ups, but the trade-off has been having a lot of mental stress from it. I have racing thoughts and trouble concentrating, plus a lot of lethargy.
I guess that this point, you really need to think through if you want to have another child or not. If you do, then I would say to hold off on the methotrexate for the time being. If you are at peace with your decision to NOT have any more children, then I would try the methotrexate and see how your body reacts to it.
Best wishes and good luck!
Hi Krista,
Im sure you do. My first thought is you have to take care of yourself so you can take care of your littles for a very long time. It really helps me along with my enbrel shot once a week. I hope you make a decision that will make you happy and make you feel better. You are not alone. We are in this together!!
Cassidy
Hi Krista,
Having RA is very scary and we all feel alone!! I have been fighting this for almist 15yrs and have tried almost every drug that there is. It is very important that you take your meds without delay because if you don’t you are only hurting yourself now and also your future. Take it from someone who delayed their treatment because I did not want to take the Methotrexate after reading the warning label. I was terrified and I am paying the price now for not listening. I will not sugar coat it for you..because you will have side effects. For me it was mostly stomach problems. The best advice that I ever recieved was from my Dr…he told me to set a timer for 15 mins and take that time once a month and cry as much and as hard as I can. When those 15 minutes are up… that’s it!! Then you fight like hell because you have to!! This is a war that is never ending!! Good luck to you and your family!! And remember that you are never alone.
Hi Krista,
Firstly, you’re not alone.
If your pain is worsening, and your rheumatologist says your RA is progressing, I’d begin the treatment pronto.
BUT — keep in mind that you do NOT have to take the MTX forever. If your pain eases up in time (remission is possible), you can talk to your doctor about the option of taking a break & working on your pregnancy plans.
Google ‘RA diet’. Daily doses of healthy goodness truly do factor into RA pain/inflammation relief. Warm regards as you make this decision.
Hi Krista,
I have been on Methotrexate since July 2012. I have to say I was pretty scared about taking it. It sounded so scary! I guess I am very lucky in that I have not suffered any side effects, as of yet! I am taking 8 pills (2.5 mg) once a week. I still have the occasional flare up, but it is nothing compared to the HORRENDOUS pain I suffered before! Give it a try. If it’s that bad, move on to another, but give it a shot first 🙂 As far as more kids, that is something you should give some thought to. My husband and I knew we were done (I have other medical issues, as well) having babies (I had my son April 2012). I wish you good luck in whatever path you choose and relief from the pain!!!!!
Erin
Hi Krista:
I was very limited when it came to the pain and swelliness of RA and have been on methrotrexate for 2 yrs and I am feeling better. I also started taking Fish OIl(omega3) capsule. About 6 months ago the Dr, started me on plaquinil and I have a very active life. I work out 3 days a week, I do hip/hop. I have a full life and I want you to enjoy life as I do. I had severe RA and flaires all the time but I have had no flaires in months. So, if you want your life back I would give Methrotrexate a chance. At the beggining it will make you sick but then after a while it all goes away. Take it at night before bed and weekend night. Good luck.
Krista: so sorry for all of this difficulty. I’m 52 and was diagnosed 2 yrs ago, so cant really respond to the kids thing, but definitely talk to your dr about it. If you feel he doesnt understand, time to find a new rheumy. I’ve been on methotrexate since the beginning and now i’m in remission. Never had any trouble with it. Little nausea the day I take it, but that was all. No lab changes or anything. Let us know what you decide, this is a wonderful site to be in touch with. We’ll be praying for you. dana
Hi Krista. So sorry for your for you pain and fear. I completely understand your fear of being put on a drug. I just started back on mthx.yesterday.Having another Is a wonderful experience, but also want to be as strong as you can be during your pregnancy And for you and husband and little One after. It’s a hard choice. I have had RA for over 20 yrs..gentle hugs and prayers for you.
God bless with peace and calmness.
Angie
Hi Krista,
It’s not easy when you’re faced with these decisions, I was diagnosed with ra about 10yrs ago and I took placquinal for a while then i changed rheumatologist through a friend’s recommendation and he wanted to put me on methotrexate,i was scared but my family convinced me, I took one tiny tablet and I was nauseated and dizzy,it lasted three weeks,that put me right off,I felt deep in my bones that was not the way for me and never took it again,I went back to my frist rheumatologist and went back on plaquenal for a while,then i started experimenting with diet and have found that the more alkaline my diet is the less inflmmation i have, these days I live on a raw food diet,drink 32oz green juice every day (wonderful alkalizer) my inflammation stays low to non existent,although if my body becomes acidic (through eating things i shouldn’t) my pains increase,the answer for me is to keep my body alkalized,also i find warm water with lemon and ginger works a treat to get acidity down. Maybe you could try this out and see if you feel better,all my inspiration has come from “Dan MacDonald the Life Regenerator”. Go to this website (youtube) and see if this is for you. I feel so blessed to have found DM it’s all about cleansing and regenerating your body. Good luck.
Kelly-
I am curious what type of thyroid disease you had. Did you have hyper or hypo. I am a type 1 diabetic, and now have r.a. And secondary sjogrens. I was told I would more than likely develop hypothyroidism because of r.a and diabetes together.
Hi Jami,
I have had thyroid disease since age 15 – I still have it. It has been both severely hyper and severely hypo at different times.
It’s been well controlled the past 6 years as long as I have access to medications – brands cannot vary, a common thyroid issue.
Carol (my wife) as had RA for 11 years now. I just asked her the question and she answered just as I would have answered. No, do NOT delay starting treatment. If you do, your joints will be damaged, and the damage may not be reversible. Yes, MTX is a PITA, but it is still better than being in a RA flare and is sure better than the joint damage.
I just read her this and she said “Yep”.
Krista,
Please know you are NOT alone. If you don’t have anyone who knows about this stuff in person, there are so many of us right her online 🙂 Unfortunately, I’ve had RA since I was somewhere around 4 yrs old and was put on MTX around 1985 for the first time. Was just taken off of it again after being on it for about 6 years again. As you know, liver damage can happen. I do know, if I would have had the choice to go without the deformities I now have, I would have done it. I tried everything they had then, but it wasn’t enough. I was told by my doc when I was 29, that I should start having kids then, or pretty much give up hope, cause they NEEDED to start biologics, or I would probably lose my ability to walk. I had the kid (in my opinion, best decision ever), but two weeks after giving birth, que the biologics. The biggest thing to remember, is that you have to do what is best for you and your family. My biggest thought has always been, “I have to take care of myself, in order to take care of the kid and the family”. Please let me know if I can do anything for you!
Krista,
Please consider Methotrexate…..I was terrified of starting it, but once I did it changed my life. I still have some bad days, but my flares have decreased considerably. I am on what is considered the max. dosage and I have not had any side effects are abnormal blood work! Metho has been used for many, many years for treatment of RA and thats more than anyone can say about the new biologics on the market! Praying for you as you make your decision as well as for your RA to go into remission! Blessings, Debbie
I’m so glad methotrexate has been working for a long time for you. I read that all the dmards st working after 2-3 years which is scary.
Sorry I just noticed all my typos! Silly iPad!
Krista,
I am a mother my children range in age from 22-8, I am also grandma to a beautiful 2 year old little girl-I started methotrexate for them. I was diagnosed in 1999 and I did not take anything other than otc ibuprofen and bextra. I gave up on those and just toughed it out for a very long time. There were times when I couldn’t get around and thought I had thrown my back out again or was just trying to do to much. I know now that those were flares. Since I did not have treatment for a very long time I have affected my tendons and nerves(enchambered,neuropathy}bursitis, damaged joints in my knees, hands, and feet. Without treatment you may do fine for a while but it can be a slippery slope.
Krista,
I started MTX injections after Humira, Embrel and a few others didn’t work for me. I never had any side effects from it. I take 1 injection Friday nights just before going to bed, this way if I do have side effects I won’t feel them because I’m asleep. I also feel good the next day with out any problems. I hope this helps you. Please take care
Hi Krista,
I was diagnosed with Inflammatory arthritis about 5 weeks ago. The doctor said that it could progress to RA or psoraic arthritis if I don’t get it treated. My Rheumatologist prescribed methotrexate (4 a week). I was really scared after reading all the side effects. Fortunately, I found that my neighbor has been taking this for the past 25 years or so. I also found one of my office colleagues has been taking this for the past 11 years. It gave me confidence and I started this about 3 weeks ago. I am doing good so far. My inflammation has reduced drastically and I am seeing lot of changes. I would recommend that you take this. Please do take folic acid as as supplement as it reduces the side effects. Also I would recommend taking the drug with food and plenty of water (preferably in the night so that you can sleep off).
Wish you good luck.
Krista…it breaks my heart when I read about a young person, in the peak of their lives, dealing with RA…
RA is a terrible disease and as you know affects the immune system. If you don’t take care of it, progresses and makes you sicker and more prompt to develop other conditions due to you being so weak. Everything is worse: a cold, a cough, etc. Methotraxate is used for treatment of cancer for children and teenagers and for us, with RA. It is not wonderful, but it is a necessary evil. I have being taking metho for over two year along with Enbrel and it really works for me. I don’t know how sick you are, but I wasn’t even able to get up… It allows you to give your body a chance to fight the progress of this disease. Concentrate on your husband, children and the life that you have now. Don’t let RA take over because you are scared. Go to Kelly’s “RA kitchen” and try to eat as health as you can, rest when you need too and seek for support among us, the ones that have this same disease. You are not alone. You will be ok. In regards of having another child, I am sure when you get RA in control, you can think about that again. My daughter is on metho as well, no babies yet, but doctor says it will be possible as she only will need a few months to “clean up” before she get’s pregnant…
Best regards and take care…
i was diagnosed in August with ra. I went to a ra doctor and she put me on mtx and folic acids as well. She told me to split up my pills and take 2 after i eat breakfast and 3 after eating dinner. This way you wont get to nauseous and sick and it works. Also eating oatmeal for breakfast when you take your mtx helps alot. When you take your mtx try to take a banana with it to help aleviate the side effects. I have been off my meds for 2 wks due to strep throat but starting my mtx again tom. My sister in law was on mtx also and stopped taking it saying too much time going for blood tests and to the doctor all the time but not me . Im trying to prevent anything from years down the road. Good luck with it.and please listen to your doctor he or she knows best
I, too, waited to start methotrexate until I had my daughter. Dr wanted me to go o n it when I was 19 (the first year I was married) but I waited 4 1/2 years longer till I had my daughter and she was weaned. I chose to breast feed for the first year to make her own immune system as healthy as possible. My disease during that whole time was considered severly active and progressive but I have no regrets. BTW, My baby girl just turned 16 😉
Krista,
I am a man and “obviously” not a mother but a father of four. I feel your grief at how it would impact your capacity to get pregnant again but consider this: Pursue treatment not only for your sake, but for the children whom God has already given to you. Damage is real so stopping/slowing the damage is wisdom for you and the family you already have.
RA hit me very hard in my 50’s. I too was afraid to take Metho do to the side-effects I read about but I realized after some clear thinking that the direct effects were worse. Fear is not a good “decider”.
I inject because most pills mess with my stomach. I did feel a depressive effect for a while but over time that went away. Also injecting before you sleep is better as the more direct impact is lessened because you are sleeping when it hits hardest. But it might not hit you at all with side-effects.
Blessings,
John
Hi Krista, I was actually on method since they diagnosed me a couple of years ago but I have been off of it due to some insurance complications. I haven’t taken any kind of meds in about 6 to 7 months and trust I would go straight back to it if I could it helps with pain and if you take it at night after dinner the side affects become less. So don’t be scared your doctor would never tell you to take something that’s not good for you. Once you become pain free and under control you can discuss having another child with alternative medications.
Krista, I was on it for 2 years.
I agree with the earlier comment, “if your rheumatologist says your RA is progressing…” I would proceed. Just be very diligent about getting regular blood work. I too was concerned about taking this medicine and the blood work kept my mind at ease.
About 4 months ago though, I started feeling much better, I had changed my diet. I completely eliminated white bread and as much gluten as possible. I introduced whole grain/wheat, near daily snacks of blueberries and strawberries and I’ve gone from nearly no milk to approx. 1 gal per week.
Gone are the daily morning stiff joints and the inability to move barefoot throughout my house. My recent x-rays were not showing erosion nor joint damage so my rheumatologist and I agreed to completely come off the methotrexate, and I’ve been off of it now since January. Thus far, no flares, I feel like I’m getting stronger and have been able to exercise. I know RA acts differently in all of us but diet seems to have some correlation ‘for me’.
I share my story because I thought I’d be taking it forever and perhaps I won’t have to. The same can be true for all of us. Continued hope for advances in the medical community so that we may one day be cured.
Krista,
I know how over whelming his all can be. First you are told you have RA then your told about the treatments and the side effects. Depending on how severe your symptoms are now, reading all of the horrible side effects from the meds definitely can put your brain into overdrive. I know because it happened to me even though I grew up watching my Mom suffer from Lupus and RA. While taking meds for Lupus, she did not take any of the RA drugs because of listed side effects.
I didn’t take the meds when I was first diagnosed. I decided the side effects were too much to chance. I like my Mom, lived with the pain and limited mobility. 2 years later my Mom passed away – heart failure from the Lupus and RA. She was 78 years old but still so full of life. Her body gave out on her. That made me rethink my decision on not taking the meds. I wondered how much longer could she have lived and with what quality of life would she have had, if only she too had taken the meds?
Since then I have worked with my rheum to try and find that golden combination that puts my disease into remission and gives me the control over my disease that everyone desires. I have been through 4 biologic medicines all coupled with methotrexate. The magic combo is still somewhat illusive. I can’t say for certain that my delay has caused the meds to not be so effective, but research says it did.
Don’t make the same mistake that I did. The meds do work. There are side effects but your rheum will help you cope. You are not alone. It is scary but we are here to help you through. Good luck!!!!
Hi Kristy,
I am newly diagnosed and I start methotrexate for the first time – TOMORROW! The side effects scare me but reading about the long term impact of not taking the medication is more scary.
My mum has been taking methotrexate for 15 years, no side effects, no liver problems so I’m hoping I inherit that quality from her too 🙂
Best of luck (to both of us) and to the rest of this fabulously supportive community.
good luck, Kylie!
Krista,
I’m so sorry you’re going through all of this and I remember the days of wanting more children. However, I know how bad the RA pain can be and I know that without the methotrexate I would not be able to function much less be a good mother. I started on methotrexate 3 years ago and have never looked back! You have to do what is right for you and your family but know that you are not alone. I wish you luck and may God bless you and your family!
I would really think twice about mtx…It is CHEMO….I took it for two years and it damaged my kidneys and liver. I thought it was ok because the rhemy put me on it, but I was wrong …and if your still thinking of having a child I would not even go there.
I was terrified to begin treatment. There are endless websites, forums and blogs of people saying they have horrible side effects to rheumatoid arthritis medication. I didn’t want to lose my independence, I didn’t want to ask for help from others on my medication days so my kids could be cared for. But then one night I broke down and just did it.
I take methotrexate my injection. Before I took it I reminded myself that people being treated for cancer with this medication that significantly higher doses. Thankfully, so far I don’t have any side effects. I take it at 8 after my kids go to sleep, eat a bowl of cereal then stay up a few more hours. I wake in the night because I have a bay and an infant and I feel fine (although I let my husband look after th kids that night, why not get something out of rheumatoid arthritis right :).
A week later I started plaquenil as well. The first two night I felt a little sick which is odd because I shouldn’t have had side effects. Then the side effects went away completely. I’ve since doubled my dose. Still fine.
Give the meds a try. It might work out better than you could imagine. Plus the potential positives mean you will prevent damage and keep your actual independence longer.
Big gentle hugs
Please start your RA treatment as soon as possible. I was diagnosed over four years ago and I’m glad I started treatment right away and I can happily say that I have no joint damage. I am looking forward to many years with my family without being held back by disabilities. Do it! Get treatment! It may suck a bit a first but it’s well worth it!
Hi Love this community! My hubby and I both have RA; not sure how common that is? I worry for my children and the genetic links to this awful disease. I have a pretty severe case of RA, have had to quit teaching, am on high dose of injected methotrexate., plus enbrel. Dr is changing me to cimzia in hopes of positive effects. My blood markers have remained very high despite the treatments. I say this to suggest to anyone that as bad as I feel all the time I am willing to try anything that might make improvement for me to be able to be more of a participant in the lives of my family.
Krista,
I know this is a hard choice for you. I decided to have all of my children prior to beginning treatment, but I had the genetic possibility of early menopause to factor in. And I had to decide after each child if I would be at peace being done–it was very difficult emotionally.
There was damage done while I was not on medication, and things got worse shortly after my last baby. It has been 5 years, and I can sincerely say that with my body now, there is no way I could have another baby–I am having trouble taking care of the family I have. But it is not like that for everyone.
If you believe in God, you might take this up with Him to see if maybe the delay in having another child is actually a blessing to you in that it may signify that it is time for you to concentrate on trying to help yourself, if perhaps for only a little while. If you go into remission, there may still be a chance that later on, you can take a break and have another baby. But the methotrexate helps to keep at bay the damage that is being done, even if you can deal with the pain.
Hugs to you and your family–I hope you are able to find some peace with whatever you decide.
Thank you everyone for your kind words and sharing your stories with me. It makes me feel better knowing that I’m not alone and have others to share my thoughts and concerns with. I have a lot to read through and consider but all that everyone wrote gives me hope that my decision will be the right one for me and my family. I only hope that the medicine will work as well for me as it sounds like it has for many others. Write now I just want the pain to get better and hopefully feel a little more like myself.
So another question to others that have fibromyalgia as well as Ra do you think metho helped with the pain from the fibromyalgia ? I also have bursitis that my doctor feels is being caused by the RA did the medicine help with that?
Thanks for all you kind words and sharing your stories.
Krista
Go for it! I have been on Methotrexate on and off for almost 10 years and initially it felt like a miracle drug. All of a sudden I wasn’t as tired and could move a little better. My RA is severe, so I take Enbrel as well, and it works well for me, but the Methotrexate still takes away a certain deep bone pain I get that the Enbrel doesn’t touch. Both drugs were miracles for me.
Don’t wait … it only gets worse.
I take Enbrel and Methotrexate – the Methotrexate makes the Enbrel more effective.
I kept a journal and went to a support group … that was a big help for me to know that I was not alone.
Other stuff – I ALWAYS write things down I want to talk to my Rhuematologist about. If it’s not written down, I always forget.
Make sure you take your Folic acid and READ THIS BLOG … it’s best.
God Bless,
Grandpa Tim
Diagnosed in 1999 – went into the hospital in a wheelchair, now I run around the backyard with my Grandson.
I’ve been on Methotrexate for about 7 years now. It does works wonders…it is also very cheap. I wanted to let you know that if you have trouble with taking the pills…you can inject this drug. That is what I do. I started out taking it in pill form, but it iritated my system…so to speak. (bloating…and discomfort, etc) and the injection does not do that at all. FYI
I was diagnosed with hashimoto’s thyroiditis about 5 years ago. Is this the thyroiditis you had? I was told I’d have it for the rest of my life, plus was likely to pick up more autoimmune diseases, which I have. Negative RA factor, yet my deformed hands, feet, and spine (I have degenerative scoliosis) are considered ‘inflammatory OA.’ Current treatment: meloxicam (Mobic). I’m pretty much depressed and homebound with fibro, chronic pain, and to top it off, am losing hair at an alarming rate. Doctors don’t know what to treat, rheumatologist said I have a ‘soup’ of maladies. I would welcome any comments!
Forgot to mention that I’m on Skelaxin, Neurontin, some oxys, and a s**t-load of supplements. Had to fight for natural desiccated thyroid medication, as most docs insist on Synthroid, which didn’t help. Had a lumbar spinal fusion at age 50, hip replacement at 59, now I’m 62. Too late for RA treatment? Starting to think it’s time to check out……