Methotrexate and Hydroxychloroquine

Posted by mcc @mcc, Jun 10 7:39pm

I have been trying to taper off Methotrexate but I keep getting flare ups after a couple weeks on the drop so my rheumatologist feels I should add Hydroxychloroquine to the mix for 8-12 weeks then try tapering off the methotrexate again with the goal of being completely off the methotrexate but stay on the hydroxychloroquine. I hate having to be on any medication let alone having to add more to the mix and was wondering if anyone on here has had experience with this and if so , your results? Thank you

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Hi @mcc. I looked through the discussions on Connect and this is the only pertinent posting I found. I’m sure you are anxious about adding more medications. If you would like to search for further discussions, you can go to the search box at the top of this page and type in your request, probably ‘methotrexate and hydroxychloroquine’. If anything pops up, just tap on it.
https://connect.mayoclinic.org/comment/308769/
I hope you can get some answers here. I’m sure other members, who have some knowledge of your concern, will answer you soon. What decision do you think you’ll make after you get some answers?

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You might find people with dermatomyositis taking hydroxychloroquine who might be able to tell you about their experience with the drug. Although it might not be the exact experience you are having but may be helpful.
I have a young family member with juvenile Dermatomyositis and she is on methotrexate, hydroxychloroquine, and prednisone. In adults with difficult to control rashes the hydroxychloroquine might be used.

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I have been on methetrixate 8 tabs 2.5 once a week for a year. I also take plaquenil twice a day along with folic acid once a day. I started out a year and a 1/2 ago on prednisone 20mg. It was a miracle. I could not get out of bed and my hands swelled. And body ached. Had RA test. Neg. I got bumps on top of my hands. And my tendons were affected. I developed carpal tunnel. I was a mess. My doctors wanted to do carpal tunnel surgery but my ra doc tried the medication first. The prednisone immediately took the pain away but it is not good for the body to stay on. I started plaqenil with the prednisone and also the methetrixate. I weined off the prednisone and my swelling is all gone but I still have lumps on top of my hands that are going away with massage, tens, and heat. I am like you. I hate taking pills. I have my blood tested every 4 to 5 weeks to make sure the methetrixate, plaquenil, is not messing up my liver and kidneys and so far my blood work is normal. My doc said I do not need carpal tunnel surgery because the swelling went away. I also have my othamologist check my eye nerve every 6 months because plaquenil can adversely affect them. So far all is good. I was really bad and my doctor was looking into me getting umbrella. Yikes! I was flipped I would have to inject myself once a week. But so far the methetrixate and plaquenil and the folic acid and no prednisone is working. So I am stuck with taking the drugs until my liver, kidneys are affected..., eyes too. My doc said so far so good. He said just keep taking the combo of pills because they are working. Just make sure you check your blood once a month and if blood good then you can keep taking. Good luck.

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Following, as I am on newly on both the Hydroxychloroquine and Methotrexate.

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@kstar077

I have been on methetrixate 8 tabs 2.5 once a week for a year. I also take plaquenil twice a day along with folic acid once a day. I started out a year and a 1/2 ago on prednisone 20mg. It was a miracle. I could not get out of bed and my hands swelled. And body ached. Had RA test. Neg. I got bumps on top of my hands. And my tendons were affected. I developed carpal tunnel. I was a mess. My doctors wanted to do carpal tunnel surgery but my ra doc tried the medication first. The prednisone immediately took the pain away but it is not good for the body to stay on. I started plaqenil with the prednisone and also the methetrixate. I weined off the prednisone and my swelling is all gone but I still have lumps on top of my hands that are going away with massage, tens, and heat. I am like you. I hate taking pills. I have my blood tested every 4 to 5 weeks to make sure the methetrixate, plaquenil, is not messing up my liver and kidneys and so far my blood work is normal. My doc said I do not need carpal tunnel surgery because the swelling went away. I also have my othamologist check my eye nerve every 6 months because plaquenil can adversely affect them. So far all is good. I was really bad and my doctor was looking into me getting umbrella. Yikes! I was flipped I would have to inject myself once a week. But so far the methetrixate and plaquenil and the folic acid and no prednisone is working. So I am stuck with taking the drugs until my liver, kidneys are affected..., eyes too. My doc said so far so good. He said just keep taking the combo of pills because they are working. Just make sure you check your blood once a month and if blood good then you can keep taking. Good luck.

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My journey is very similar to yours. About 3 1/2 years ago all my symptoms came on extremely fast(not sure if there is a connection but it was within a week of getting vaccinated) but started with extreme headache, pain across my back, neck, shoulders and arms and joints, then burning in my hands and feet. I also had extreme muscle wasting and was to the point where I couldn’t get out of bed or dress myself (before this I was very active, went to gym daily and daily evening walking) so got in to see dr and had blood work done. Inflammatory and rheumatoid factors were high(CRP was very high @169.2) so they immediately put me on high dose prednisone(50mgs daily) then tapered down weekly until I was able to see a rheumatologist. He had me continue the tapering off prednisone but started me on methotrexate @25mgs per with a plan to taper 2.5mgs every 8 weeks with the hopes of being able to be off everything within a couple years but each time I drop below 7.5mgs I start having flair ups. I also added many supplements to the regimen and over time I have gradually improved by about 75% and my blood markers are all back down in the normal range. My rheumatologist is now recommending that I start taking Hydroxychloroquine @400mgs daily then after 2 months try tapering off of the methotrexate again with the intent of just having to take the hydroxychloroquine alone as it supposedly doesn’t have as bad of side effects as methotrexate?
My big concern is that after being through so much in the last 37 months I’m leery about trying anything else that could potentially cause eye damage now so I’m considering just living with the fact that I may have to be on methotrexate forever now and just continue as is. Thanks

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Hi , I’ve not taken Hydroxychloroquine to come off methotrexate. I was given it for my fibromyalgia. Unfortunately I developed a rash on my neck and face and was I couldn’t take it. I took methotrexate for my PsA . I had no adverse symptoms noticed until I had sepsis and it was discovered I had liver disease. They attribute this to years of anti inflammatory medications for autoimmune diseases, my autoimmune diseases themselves, and the methotrexate use. Can never take it again or any kind of anti inflammatory medication, Tylenol etc…

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@cbmb

Hi , I’ve not taken Hydroxychloroquine to come off methotrexate. I was given it for my fibromyalgia. Unfortunately I developed a rash on my neck and face and was I couldn’t take it. I took methotrexate for my PsA . I had no adverse symptoms noticed until I had sepsis and it was discovered I had liver disease. They attribute this to years of anti inflammatory medications for autoimmune diseases, my autoimmune diseases themselves, and the methotrexate use. Can never take it again or any kind of anti inflammatory medication, Tylenol etc…

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Thank you and sorry it lead to this with you

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I was on both Methotrexate and Plaquenil (Hydroxychloroquin) for about fifteen years. The MTX on Fridays seemed to relieve swelling and other stress related effects. Twenty years in, I retired and did not need the MTX and reduced Hydroxychloroquine to 1 x/day. I also had to stop taking NSAIDs but have found that a non-processed diet (moderate nightshades, eliminate sugars) and staying hydrated help alot, in addition to PT and keeping up basic exercise. In my 70s, I have some kidney issues, but no other effects that the great life I was able to have with the help of the drugs. Inactive ingredients can affect how they do for you; try a name brand if the generic gives you side effects, for instance.

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@mcc

My journey is very similar to yours. About 3 1/2 years ago all my symptoms came on extremely fast(not sure if there is a connection but it was within a week of getting vaccinated) but started with extreme headache, pain across my back, neck, shoulders and arms and joints, then burning in my hands and feet. I also had extreme muscle wasting and was to the point where I couldn’t get out of bed or dress myself (before this I was very active, went to gym daily and daily evening walking) so got in to see dr and had blood work done. Inflammatory and rheumatoid factors were high(CRP was very high @169.2) so they immediately put me on high dose prednisone(50mgs daily) then tapered down weekly until I was able to see a rheumatologist. He had me continue the tapering off prednisone but started me on methotrexate @25mgs per with a plan to taper 2.5mgs every 8 weeks with the hopes of being able to be off everything within a couple years but each time I drop below 7.5mgs I start having flair ups. I also added many supplements to the regimen and over time I have gradually improved by about 75% and my blood markers are all back down in the normal range. My rheumatologist is now recommending that I start taking Hydroxychloroquine @400mgs daily then after 2 months try tapering off of the methotrexate again with the intent of just having to take the hydroxychloroquine alone as it supposedly doesn’t have as bad of side effects as methotrexate?
My big concern is that after being through so much in the last 37 months I’m leery about trying anything else that could potentially cause eye damage now so I’m considering just living with the fact that I may have to be on methotrexate forever now and just continue as is. Thanks

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I
Have been taking hydroxychloroquine for 18 years and I have never had any negative effects from this drug. I was also on methotrexate for five years but it was stopped because I simply didn’t need it any longer. I did have an episode of Polymalagia Rheumatica last year which was the most painful condition I ever had, and it sounds as though you are struggling with it too. Prednisone helped tremendously, but tapered off after six months. I am now suffering with terrible spine issues, and I’m not sure if PMR did its damage or not. Seeing a new neurosurgeon next week.

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