Ra meds

Posted by lh17 @lh17, 6 days ago

I have recently been diagnosed with RA. I was shocked to hear this as I have always been active and felt good. Im 61. Doc prescribed 10mg of pred and 400 mg of hydroxyquine. I have only started the pred and cannot get myself to take the hydroxy. I am so anti-meds but also I have researched and realize it is a progressive disease. Do I have to take the hydrox or can I just stay on low dose of pred? Will the disease continue to progress? I would like to ween off pred to 2mg eventually and take it from there. The pred has made me feel great, as others have stated. But I do not want the weight gain and feel some palpatations and broken sleep just now into 20 days. Im so scared of the meds. I greatly appreciate any advice.

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You will find you may change meds over the years. I was on prednisone since 2008 but now with a new endocrinologist I am changing to hydrocortisone with a divided dose each day, hoping to help lose some of the weight gain that is making me miserable. Your condition changes either subtly or dramatically .. so will your medication to keep pace with it. Everyone is so different, advice is tricky.

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I would second what several others have said. Prednisone takes away the pain and makes you feel wonderful, but talk to your doctor about side effects and what happens with long-term use. I believe it caused my osteoporosis when I took it as a young adult. I believe it was considered a 'wonder drug' for awhile, but I'm pretty sure doctors use it very cautiously and short-term now.
As far as fear of medications.....I can only speak for myself, and I know reactions to meds are very individualized, but over the 13 years I've had RA, I've taken hydroxychloroquine, methotrexate and humira (at the same time), and I've never had a problem with any of them. My RA is under control, and I feel 'normal', i.e. I forget I have RA. When I was diagnosed, my pain was very severe. I didn't want to take meds, either, but am so thankful today that I did, and that those meds are out there, as I now lead a normal, happy life. Whatever the risks, it's been worth it, for me. I now only take Humira and a very minimal dose of methotrexate. Plaquenil (hydroxy-) can carry a risk of eye damage, so you need to get checked annually. As others said, make sure you see a rheumatologist. Best of luck to you! I hope you find a successful treatment plan.

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@lucy73

I would second what several others have said. Prednisone takes away the pain and makes you feel wonderful, but talk to your doctor about side effects and what happens with long-term use. I believe it caused my osteoporosis when I took it as a young adult. I believe it was considered a 'wonder drug' for awhile, but I'm pretty sure doctors use it very cautiously and short-term now.
As far as fear of medications.....I can only speak for myself, and I know reactions to meds are very individualized, but over the 13 years I've had RA, I've taken hydroxychloroquine, methotrexate and humira (at the same time), and I've never had a problem with any of them. My RA is under control, and I feel 'normal', i.e. I forget I have RA. When I was diagnosed, my pain was very severe. I didn't want to take meds, either, but am so thankful today that I did, and that those meds are out there, as I now lead a normal, happy life. Whatever the risks, it's been worth it, for me. I now only take Humira and a very minimal dose of methotrexate. Plaquenil (hydroxy-) can carry a risk of eye damage, so you need to get checked annually. As others said, make sure you see a rheumatologist. Best of luck to you! I hope you find a successful treatment plan.

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Thank you so much for the information. I consider your story a positive one and happy you are feeling good. I research and ask questions on many forums I am hearing similar stories in regard to the temporary and long term effects of prednisone. I have decided to take no more than 10mg for 30 days. I will see my doc and discuss options as to the immunosupressant. I have consulted 2 different rhuemotoligists. One wanted me to take pred for 6 weeks and start hydro 400mg, the other 18 days and hold off on hydro. Interesting fact...one male older, one female younger. Can I ask if the meds you are taking effect your ability to fight off infection? I appreciate your response and hope you continue feeling well.

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@lh17

Thank you so much for the information. I consider your story a positive one and happy you are feeling good. I research and ask questions on many forums I am hearing similar stories in regard to the temporary and long term effects of prednisone. I have decided to take no more than 10mg for 30 days. I will see my doc and discuss options as to the immunosupressant. I have consulted 2 different rhuemotoligists. One wanted me to take pred for 6 weeks and start hydro 400mg, the other 18 days and hold off on hydro. Interesting fact...one male older, one female younger. Can I ask if the meds you are taking effect your ability to fight off infection? I appreciate your response and hope you continue feeling well.

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Thank you for your well wishes, and the same to you! The meds I'm taking are immune suppressants, so in theory, I'm more susceptible to infection. With that said, in the 13 years I've been taking all these meds, I've had no infections from cuts, etc., and really, my overall health has been good. I've had a few colds, had Covid once, just had sinusitis, but nothing really bad. I do take a daily vitamin, vitamin D, flaxseed oil (for my eyes), folic acid (to counteract any possible methotrexate side effects) a bit of magnesium, and the past 6 months I'm taking collagen peptides. I also do not have a spleen, so for me, it's important to stay up to date on vaccines to mitigate or avoid possible illness. As I said, I've been lucky and really have no problematic side effects to vaccines, either. The only exception was the Shingles vax, which made me feel unwell for a couple days. Compared to what I hear Shingles does, well worth it. I'm sure different doctors have different opinions on treatment, and how aggressively to treat your RA, depending on the severity of symptoms. I know some people advocate diet changes, but for me, with how severe my RA was, I was willing to take any risks to feel better. I wish you well, and encourage you to be your own advocate. The disease can make you feel powerless. Find a doctor that listens to you, and stays current on treatment options. Good luck!

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Everyone’s RA journey is different. It sounds as through they are trying the first line drugs which are typical of newly diagnosed cases. They may be trying to see how you respond. They don’t typically like to continue steroids long term. Talk to your doctor about Disease Modifying Antirheumatic Drugs (DMARD) and Biologics. Most are immunosuppressant medications so there are risks associated with them but they slow and/or change the progression of the disease.

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The prednisone is often used while someone adjusts to a new drug and then is tapered down. The goal is always get off off steroids altogether or if no other drug works, then to figure out what the lowest possible dose is as there are a multitude of side effects. I have been on 8 mg of Medrol for the last 6 years as I cycle through different biologics trying to find one that controls all my symptoms so I take Omeprazole to avoid ulcers and Boniva to prevent osteoporosis. Steroids cause cataracts as well - once my vision was 20-100 and I was no longer legal to drive, I had no choice but to have cataract surgery for both eyes last year at 55. Weight gain and fluid retention is common with long-term use which affects blood pressure, and it can increase blood sugar by making the liver resistant to insulin too. Short-term to get started on a new drug or to control a flare is common, but if you can find a good DMARD or biologic that controls your symptoms, that's a better choice than long-term steroid use. While I haven't found the right one yet, taking Methotrexate and Cosentyx by infusion has me in a much better place than I was 6 years ago when I couldn't get out of bed. My doctor in addition to the drugs recommended an anti-inflammatory diet and asked me to find a way to deal with stress (she recommended yoga and Tai Chi but neither was really a good fit for me, so I started swimming).

As far as lowered resistance - I'm finding that I'm actually a lot less sick than I used to be. I think in part that's because I was diagnosed right before the pandemic so from 2020 onwards, I'm much more aware of being in crowds during cold and flu season, but when I have gotten a cold, I seem to be over it much faster and it doesn't progress into bronchitis like it always did. My doctor says that's in part because the inflammation is better controlled now than before. Wishing you the very best of luck 🙂

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@pm56

The prednisone is often used while someone adjusts to a new drug and then is tapered down. The goal is always get off off steroids altogether or if no other drug works, then to figure out what the lowest possible dose is as there are a multitude of side effects. I have been on 8 mg of Medrol for the last 6 years as I cycle through different biologics trying to find one that controls all my symptoms so I take Omeprazole to avoid ulcers and Boniva to prevent osteoporosis. Steroids cause cataracts as well - once my vision was 20-100 and I was no longer legal to drive, I had no choice but to have cataract surgery for both eyes last year at 55. Weight gain and fluid retention is common with long-term use which affects blood pressure, and it can increase blood sugar by making the liver resistant to insulin too. Short-term to get started on a new drug or to control a flare is common, but if you can find a good DMARD or biologic that controls your symptoms, that's a better choice than long-term steroid use. While I haven't found the right one yet, taking Methotrexate and Cosentyx by infusion has me in a much better place than I was 6 years ago when I couldn't get out of bed. My doctor in addition to the drugs recommended an anti-inflammatory diet and asked me to find a way to deal with stress (she recommended yoga and Tai Chi but neither was really a good fit for me, so I started swimming).

As far as lowered resistance - I'm finding that I'm actually a lot less sick than I used to be. I think in part that's because I was diagnosed right before the pandemic so from 2020 onwards, I'm much more aware of being in crowds during cold and flu season, but when I have gotten a cold, I seem to be over it much faster and it doesn't progress into bronchitis like it always did. My doctor says that's in part because the inflammation is better controlled now than before. Wishing you the very best of luck 🙂

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Thank you for the valuable feedback. I will only be on 10mg for no longer than 30 days than my doc will discuss the immunsuppresants. I hope you continue to feel well. This forum has been a blessing.😊

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You likely wont be able to take Prednisone for the long term. Believe me, many of us love Prednisone because it relieves all my pain - even rib pain that has nothing to do with RA. I was put on it when I was first diagnosed at 62. It think thats a first response to knock down the inflammation while they evaluate more carefully. But pull your chair up to the fridge and don't expect much sleep 🙂 I only take it now during bad flares.

If I were to place a bet, I’d guess that the Doc will stop the prednisone to see what happens. If your pain and inflammation returns, maybe Methotrexate will be the first Disease Modifying Drug they try. I was on that and folic acid to mitigate some side effects of Methotrexate. Maybe the doc will choose hydroxychloriquine.

After methotrexate for about a year, it was no longer effective, so i was put on Enbrel. That worked a couple of years but the methotrexate I needed with it attacked my liver and when the doc reduced it, I then developed antibodies to Enbrel and was put on Humira. That worked for a few years and then it too became ineffective. Now i am on Remicade for four or five years and so far so good.

I bore you with that medication journey to prepare you that it is not an uncommon one and it doesn't indicate your doc is not good. It’s just the nature of this disease, the drugs available to treat it, and how our bodies respond to them.

As bad as RA is, remember to be thankful you contracted RA after some effective treatments had hit the market. Those in our parents’ generation had a vastly different experience.

Good luck to you!!

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