How long on Methotrexate & Prednisone?

Hello all,

I have been taking Methotrexate & Prednisone since May 2007 and since then I have only felt better for 2 months. All the other time I feel like I'm always in a flare. Has anyone else gone years of feeling like your body is on fire?

My question is: shouldn't I be feeling better by now? I've had these severe symptoms for over 2 years. How long do most of you stay on Methotrexate & Prednisone? I know as long as my labs are okay I can stay on Metho for a long time but I was told that I really need to get off of the Pred. I take 20mg weekly of Metho. and I'm down to 10mg daily(was at 5mg) of Pred.

I have sarc of my skin, muscles and joints but not in my lungs. I have found out after last weekend that spending to much time outside in the sun can bring out a flare, at least it does for me.

I guess like everyone else I was hoping that it would burn itself out in a couple of years but that obviously isnt happening. I am still curious how long do most of you stay on meds. I am better than I was before I was first diagnosed, but my body just keeps flaring! Very frustrating!

Thanks for listening,
TeresaK

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23 replies. Join the discussion

About 6 years on pred, 2 on methotrexate, 1+ on thalidomide, and 3 on remicade (along with some others). After hoping for remission that hasn't come, my path seems to be a slow downward journey with neuro-sarc.

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Hello dwellz,

Thanks for your reply. Were you on the Metho & Pred at the same time? Which helped more, Remicade or Metho & Pred? How were you diagnosed with neuro-sarc? I was wondering because I seem to have some strange symptoms, like numbness in my nose, tongue and left arm and hand. Also tiny twitches all over my body(but mostly in my feet & toes)that you can't see, but I can sure feel them. I had a brain MRI and it was normal so I would say neuro-sarc is ruled out.

I'm sorry to hear that you have been on the decline over the years. I really hope that the Drs. can find something that will work for you. I think I know how you feel because I think I'm at the point that I may have to try something different.

Take care,
TeresaK

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i too have been on pred and meth for two years , i have good days then bad , but today i start remicade due to the side effects of predidsone...weight gain bruising ,insomnia, mood swings just to touch a few . hoping to get off the others with this . i have skin,sinus,liver and eye sarc. very little in my lungs thank goodness. and i believe too the sun is not your friend anymore. hope you find relief soon

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hi, the numbness in your hands arms etc, is the sarcoid flaring up,i too have had these symtoms, try eating raw garlic as it helps circulate the blood, i eat raw garlic a couple of cloves a day, it helps, also eat bananas they are good for circulation, avoid the sun and foods rich in vitamin d and calcium, drink plenty of water and try gentle exercise, hope you feel better.

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I've been on prednisone this time since July 2006 and methotrexate since Oct 2006. Recently my dose of meth as raised to 17.5 mg weekly. I can't say I feel good, but my symptoms from the sarcoid are under control. I often ask the doc if I feel like crap from the drugs or the disease and the answer usually is, "Yes"....

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TeresaK,
I have wondered the past couple of months if it is the prednisone and I was on methotrexate now imuran., that is making me feel so sick or the disease. Before the drugs I had good and bad days but I could still function in the world. I've only been on the drugs for 3 months but I can't even go back to work right now because the symptoms/disease makes me feel so lousy. The only way to really know is to get off of them. I don't know but the Dr.'s don't either. May I suggest theGardeners journal on the Alien vs. Monster in the symptoms series. Just another perspective. The truth is we know how we feel and I'm sick and tired of feeling sick and tired.

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Hello all,

Thank you for letting me know that I'm not alone with all these meds. Although I am sorry to hear that everyone has been suffering for such a long time.

I just spoke with my Doc today and we decided to increase the Prednisone. He was thinking that I had the sarc under control at a higher level and when it was reduced recently is when this nasty flare-up came back.
I'm not crazy about Prednisone, BUT I am crazy about feeling better!

Thanks again for all your input.
Take care everyone,
TeresaK

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I have been on methotrexate for 4 years and on and off prednisone my doctor keep me on prednisone for 2 months and off for 3 months he told me I can get addicted to prednisone but the methotrexate I stay on 10mg daily, theses are the ones I only been on but go to the doctor every month, but it has only effected my right eye and have left me blind but the lungs, liver are still in good shape but the muscle are begining to show little sign. Garlic is a great medicine for your system or garlic pills, but plenty of vitamins to build your system up.

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I could not take methotrexate it caused my skin to break out in lesions and I had to stop taking it. I have asked my GP to refer me back to my specialist as he discharged me in January. I felt abandoned when he did that. How can I be discharged when I still have active disease and feel so ill? What am I supposed to do when I have questions?

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Hello janepauline,

Are you on an HMO Insurance plan that requires you to go through your GP? Does your Ins. not allow you to make your own appts. with your specialist?

I'm sorry that your still suffering so much and your Dr has discharged you. The problem is that alot of Drs just don't know what to do with us. What makes the Dr believe that your disease is not active? Did your Dr try any other meds besides Metho since that one didn't work for you? If your still having symptoms I would call back there office and let them know OR find another Dr that is willing to help & listen.

I hope you get to feeling better soon.
Take care,
TeresaK

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Hi TeresaK
I live in England, so things work a bit different here. I can not just get an appointment with my specialist with out going through my GP. I have not been put on any other meds to try to control my neuro and sarcoid. I am waiting for an appointment so I am going to ask to try something else. Thanks for your support. Jane

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Hi Jane,

HMO Ins. plans are similar to what you have in England. You have to go through your primary Dr. and get an authorization to a speicalist. Plus there are only so many Drs. that are on HMO plans so you may not get referred to the Dr. of your choice. I like being able to choose what Dr. I want to see, so I stay away from those type of plans. But Ins. here is very expensive. Even when your employer is paying for part of it, it is still a fortune for family coverage. There is a lot of people that are uninsured here because it is so expensive. So in England do you get free Ins. and then just pay a copay per office visit? It's amazing and interesting how different are countries do things.

I hope your Dr. has answers for you at your next appt. It was nice chatting with you.

Take care,
TeresaK

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I was on low dose MTX 2.5 anf5mg and 15mg preds every other day , 37.5mg of effexor daily (to counter the preds) for a year. Got every cold and intestinal bug imagineable. Took boatloads of folic acid, biotin and vitamin C ect. SOOO tired and flu like all the time, no break! I went off the drugs (UGH did not expect to feel pain like that, 6 weeks of utter pain hell !!!!). However, after the withdraw from the drugs, I feel better than I had in 6 years! 3 months later, some minor symoptoms came back but not like I was before I started. Since I weaned myself off the drugs and had gotten lots of studies done and all checked out OK. Cutaneous carc and periferal neuropathy, swollen lacrimal glands and extreme fatigue are my symptoms now. I was just prescribed dexadrine to keep me from sleeping all day. It is working out great. Lesson learned, sometimes I have to go off the drugs to see where my illness is at and determine a path forward. Some doctors will keep you on a dosing regimen (forever!) and not ever specualte that you are in a steady state (not getting worse). I took it upon myself to wean off the drugs and I am happy where I am, at least for now.

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FYI- During the 6 weeks of hell pain during the withdraw, I almost went back on the drugs ( at least preds) because I thought my pain was due to the sarc. However, I really wanted to get a baseline of where I was. I am so glad that I went off the drugs because I am able to see that the regimen worked. During the withdraw, the doctor told me that the drugs sideffects can mask the symptomology of a disease and make it difficult to determine a remissive state. I hope this helps.

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Hello Shelldonovan,

Thanks for the info.

Reducing the Pred. did mimic my sarc symptoms. Even though I have increased the dosage I still have the same symptoms. Total body pain, fatigue, sweating(drenching)in the evenings, some itching. My face looks swollen again but I don't know if this is from increasing the Pred. or from my parotid gland swelling again. I know if I tell my Dr. that my symptoms are still the same then he will just increase the meds more so I'm trying to tuff it out and see if this flare will pass.

I'm glad to hear that you were able to stick with it and get off the Pred. It sounds like your on the path to better health.
Thanks again,
TeresaK

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Hello Teresa
I have been on Methotrexate since 2004 and I still have flare ups. I was on Prednisone from the time that I was diagnosed with Pulmonary Sarcoidosis in March of 1998 and I was on it until August of 2004. Of course the Prednisone did it's damage. Right now it seems like the Methotrexate is the best thing right now. I'm on 20MG of Metho weekly. It would be good if you could get off of the Prednisone because it is not good being on it for a very long time. Tell me more if that's okay. I know having this freaken Sarc Monster is no fun. Between the pain, the very bad night sweats, the granulomas and the constant tired feeling, it's hard to know which way to turn. I'm here if you want to talk more about it. Take care my friend!
Rhonda

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Hi Rhonda,

Wow, I had no idea that you could stay on Metho that long? Has your dose been up and down thru out the years? Did you get off of the Pred. because your Dr. switched you to Metho? My Dr. feels that I need to be on both meds to keep the inflammation in control.

My Doc took me off of the Methotrexate about 9 months ago because all of my hair was falling out. But I was at 25mg weekly at that time so I was feeling pretty good thinking that I was in remission(I stayed on the Pred.) It only lasted for about 6 weeks then all of my symptoms came back, so my Dr. and I discussed the risk and benefits of all the other meds and decided that the Metho still had the least side effects. So I went back on it but starting at a lower dose which seemed to help alot with the hair loss. I am back up to 20mg a week and I started to notice a little more hair loss and I do get alot of right stomach pain but I guess I can put up with it.

Right now I have the night sweats and muscle pain so I'm thinking that the Metho isn't working any more. Do you get night sweats and muscle pain too?

Sometimes I get confused about when to call my Dr. because I know if I complain then my meds will just be increased and I don't know if that's what I want at this point, but on the other hand when your in pain you just want to feel better.

Thanks for listening, it was nice chatting with you.
Take care,
TeresaK

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Hi TeresaK
Yes, I do have the night sweats and pain. It really is bothersome. My doctor and I worked on weaning me off of the Prednisone because it was causing me other problems. Yea it is a long time to be on Metho but it seems to be the only thing right now that helps somewhat. My doctor tried me on Imuran but that caused me to have pancreatitis and was causing my liver to swell so we stopped that one immediately. From dealing with this Sarc, I know that when we suffer with the night sweats and pain, it is still acting up. I understand about the hair loss because the Metho caused all of my hair to fall out. I don't mind though, I always wanted to cut it off...LOL Hey you gotta laugh sometimes. My doctor first started me on 30 of the Metho and then we went down to 15 now I'm back up to 20. I definitely will not go back on Prednisone becauce like I said it caused me so many problems. Just last month, I had to have two hernias repaired that were caused by the Prenisone and the Sarcoid combined. I have had so many surgeries because of this Sarcoid. I had to have my thyroid removed and other surgeries. Has your doctor told you that your Sarcoid is Chronic because that's what it sounds like. Do you have a lot of support from your family because that helps a lot? Thank you for chatting because it helps knowing that others understand what you are going through.
Take care my friend!
Rhonda

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I have been on methotraxte for 8 yrs. and i am having trouble with my stomach and lumps in my body and tireness so my doc, have cut me down to 1-2,5mgl. only on sat, and sun be carefull and get blood check often ,stay on top of you feels and tell your doc about anything that show up new and you keep your notebook of new symptoms that occur. Sarcoid can show up anywhere,okay I was 22 when i got sarcoid. It rough sometimes and don't get over tired do u are in big trouble.

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Hi hope777,

Thanks for the reply. My stomach hurts all the time too. I do get my blood labs checked every 2 months and so far so good. Probably my biggest complaint while taking Metho would be all of the hair loss. My hair now is SO thin. I get it colored so I know it's growing but you sure can't tell.

Most of the more severe symptoms are the same old ones that I've had for the past 2 1/2 yrs. The constant muscle pain and fatigue is probably what bothers me the most. I guess I'm a little disappointed to here that alot of you have been taking the same meds for so long. I was kind of hoping(like most of us)that I could take the Metho and "presto" would be better. But reality is that I now know that I have the chronic form of sarc so I'm in it for the long haul. I will continue to have a positive attitude, I believe it has gotten me this far.

Thanks for the chat.
Take care,
TeresaK

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