Changing from methotrexate and prednisone to methotrexate and hydrochloroquine - is this a positive change?

[Nocciola]

I was diagnosed with aggressive RA in February 2019, placed on prednisone, tapered to 5 mg while awaiting second opinion. First doctor wanted me on methotrexate plus Enbrel, insurance plan approved. Second opinion said start on methotrexate, wait on Enbrel. Started 15 mg oral methotrexate in April 2019, with 5 mg daily prednisone. At 3 month appointment in August 2019, doctor wants to slowly taper off prednisone, reducing to 4 mg for a month to prevent a flare, while adding 200 mg hydroxychloroquine twice a day. I think she is changing my treatment because I have mild trigger finger in my left ring finger that the 5 mg oral prednisone has not managed to eradicate.

Is this a positive change?

Honestly, I am ready to just add the Enbrel now since the disease activity is still present (as evident by the mild inflammation in my left ring finger. Rarely have any other symptoms unless I eat dairy, then I have mild aches and pains, especially in tailors bunions, where I have erosions).

I am disappointed, as I have been following a great diet of mostly green tea, fruit, vegetables, salmon and sardines. Although my bloodwork is great and normal e.g. C-reactive protein less than 1, sedimentation rate of 11(have not retested anti ccp because doctor said that is an indication of disease severity not activity), the disease is still lurking.

I have maintained a good weight of 125-128 lbs. (9 stone) on my 5 ft 7 inch (170.18 centimeters) frame, and I go to the gym 5 days a week. I sometimes have pain when I eat rich desserts or drink lattes - I think dairy is inflammatory for me; though I love whipped cream, cheese, tiramisu, etc, I have managed to decrease to just an occasional treat a few times per month.

I hoped that I could beat this through diet but it is not to be. My doctor thinks the supplements are a fad, she believes the RA is a problem at the T cell level.

med.stanford.edu/news/all-n...

Sorry for the long post, I appreciate any responses. Thank you for sharing your knowledge and experience.

[helixhelix]

I would view that as a positive change. Prednisone is a drug that is not good to take long term, except in tiny, tiny quantities. And is better only to use long term when nothing else has worked. Hydroxy is the gentlest of the DMARDs and can work well with MTX to control disease activity rather than just covering it up like the pred.

It’s slow acting (of course! Nothing is quick in RA world) and side effects are rare. Especially with you looking after yourself so well you should be giving yourself the best chance possible for it to work. It also doesn’t compromise your immune system like Enbrel.

If I were in your position I’d give it a try for 6 months, and if it hasn’t worked by then ask to change.

And yes interesting that researchers carry on looking at what’s awry at a cellular level. But doesn’t really tell us why or how to cure it, so that is still a way into the future. And experiments in test tubes are equally a long way away from even starting human trials so I don’t get too excited now.

[Nocciola in reply to helixhelix]

Thank you helixhelix!!! I was afraid of the hydroxy but my family, friends and colleagues say trust the experts. It is so great to have input from people like you who have first hand knowledge of and experience with the disease!

[helixhelix in reply to Nocciola]

Well hydroxy worked for me for about 8-9 years...

[Stowe in reply to Nocciola]

Good to hear that you're going to give it a try, I'll be going on it to in Sept with Methotrexate and tapering the prednisone, currently on 7.5 of prednisone and 20 of Methotrexate. Fingers crossed for us both that if works well and there are minimal side effects. X

[Nocciola in reply to Stowe]

Yes, wishing you well, Stowe! It sounds like we have similar treatment plans. After reading articles on bridging with prednisone, target treating with methotrexate, and combining methotrexate with hydroxychloroquine, I am very optimistic!

ncbi.nlm.nih.gov/pmc/articl...

How to Get the Most from Methotrexate (MTX) Treatment for Your Rheumatoid Arthritis Patient?—MTX in the Treat-to-Target Strategy

Peter. C. Taylor, Alejandro Balsa Criado, [...], and Rudiger B. Mueller

academic.oup.com/rheumatolo...

The effects of methotrexate and hydroxychloroquine combination therapy vs methotrexate monotherapy in early rheumatoid arthritis patients

Lisa Schapink, Cornelia H M van den Ende, Laura A H A Gevers, Annelies E van Ede, Alfons A den Broeder

Rheumatology, Volume 58, Issue 1, January 2019, Pages 131–134, doi.org/10.1093/rheumatolog...

Published: 04 September 2018 Article history

[Stowe in reply to Nocciola]

I'm sure it will be fine for us, thank you for the links I've just started reading through them.

[Hessie5]

Hi - when I was first diagnosed I was on mtx then introduced to hydroxy - I did find the hydroxy helpful, but mtx not so good. I am diagnosed with severe RA.

Pred is good but masks - agree with Helixhelix response to you.

All the best with the change. Hessie

[Nocciola in reply to Hessie5]

Thank you Hessie5. I am hopeful the hydroxy will work better for me too.

[charisma]

Hi ChaiNocchi

I was on MTX and Hydroxychloroquine. They go well together. For any RA but even more so when it is aggressive, best to get early aggressive treatment within three months of symptoms appearing.

Start out with higher doses of DMARDs and then reduce after disease activity is controlled.

Steroid drugs mask symptoms, and as others have commented, are very bad long term.

[HappykindaGal]

I was diagnosed with aggressive RA too. I was on mtx, hydroxyl and Pred. The minute the Pred dropped below 5mg, I was in agony. My inflammation was rampant. Docs dropped the hydroxy, and put me on benepali (Enbrel biosimilar). Tapered off the Pred. Since November last year, I’ve got my life back to almost pre RA days. I do what I want, when I want, eat what I want, when I want. Best thing that could have happened under the circumstances 😍

[Nocciola in reply to HappykindaGal]

Thank you Gwendolyn. Went I went off the prednisone on my own in April, that is when the inflammation appeared in my left ring finger, and hasn’t gone away. I went off the prednisone for about 1 week, while I waited for the appointment for the second opinion, because it looked like I was getting tiny cuts on the back of my hands (maybe thinning of the skin). When the doctor put me back on the prednisone, the cuts did not return, but the trigger finger never went away either. So glad that the Enbrel is working very well for you! ☺️

[HappykindaGal in reply to Nocciola]

Preds a funny drug - it took me 3 attempts to come off it. Every time I got below about 5mg, I couldn't walk, hold a pen and the pain in my hand and wrist was excruciating. When the biologics kicked in, I've not taken one since.

[Mandalou]

Hi ChaiNocchi

My journey in a nutshell was large doses of Pred at onset followed by Mthx and Hydroxychloroquine, Sulfasalazine and Hydroxychloroquine then Leflunomide and Hydroxychloroquine then after failing on all the above over a period of six months ( my liver didn’t like any of the traditional DMARDS)

I have now been settled on Etanercept ( Enbrel then Benepali) combined with 200mg of Hydroxychloroquine for approx the last four years. I tapered off the Prednisalone over a few months when the other drugs kicked in and have been able to stay off it since thank God.

Helix and the others give great advice.

Looking after yourself in the way you obviously do is such a positive thing for your general health. So don’t be disheartened totally regards your diet and exercise routine.

Enbrel and Hydroxychloroquine have worked very solidly for me and hope they continue to do so.

I would say any regimen that brings you off Prednisalone is worth a try absolutely .

Very best to you.

M x

[Nocciola in reply to Mandalou]

Thank you very much Mandalou. Very happy to hear that Enbrel and hydroxy are working well for you!😊

[Troygirl]

Wow I wish I could get to 4mg of prednisone without flaring!! You are lucky!!

I have needed to take prednisone 10mg in morning & 10mg at night to combat terrible wrist & hand flares that have been going on for months & before that shoulder flares for months!

Every time I try to reduce I start to flare again! Even 2.5!!

The RA doctor is having a hard time finding the correct biological to get me off the prednisone, but NOTHING is working! Now on IV Infusion Acterma & even that is not working!

I am getting worse instead of better. Pumping All this prednisone plus all the different biologicals into my body (5 so far) has left me so much worse off than when I first started this nightmare merry go round in 2017!

Had to have Sinus Surgery last week due to a fungus that was growing up in my sinuses. This was definitely caused by the Humira I was taking!

My long shiny healthy hair is fried & it broke off to just below my ears & have to wear hair pieces! Have 2 giant fat pads growing on each side of my neck, gained 25 pounds in 8 short months, have moon face! I am a total mess!!! When I see People at the market, they do not even recognize me!!

I am thinking of telling my RA dr that I do not want anymore biologicals!! Why keep putting poison in my body that just is not working at all & getting worse not better?

I will figure out how to reduce the prednisone without getting everyday flares. Maybe with some Motrin & real CBD oil? (I just got approved for the New York State Medical Marijuana Program & am interested in just the real CBD oil, no THC content)

Oh and number one thing to fight flaring, try to stop being so stressed out about how bad I look!

It's hard, but I have to start somewhere.

[Stowe in reply to Troygirl]

Hello Troygirl

Oh my gosh, it sounds like you are having a terrible time, my heart goes out to you. I really hope you are able to find a treatment plan that works for you and takes away your pain. X

[Nocciola]

Thank you for responding Troygirl. I am optimistic that they will find a combination that will work for you. Doctors are working very hard to find a cure: med.stanford.edu/news/all-n...

[Cal66]

Hi

If you sell do go on Hydroxichlorine, make sure to go for annual eye checks.

I have sle & RA amongst other things. I was previously on Prednisone & Azathioprine originally, was taken off Azathioprine because of blood count & put on Hydroxychlorine. Now taken off them, I am having tests to see if i have developed Hydroxichloroquine related Retinaitis. I was on them many years, so don't miss any eye appointments.

Good luck hope you feel better soon, I also have lived on Fresh salmon & green beans every day for over a year but to no avail my RA & everything has got worse, especially since coming off Hydroxichloroquine

[Nocciola in reply to Cal66]

Thank you Cal66. I will be vigilant about getting my eyes checked. My grandmother’s sister went blind from glaucoma in her early twenties so I am paranoid about my eyes, that’s why I was so reluctant to go on the hydroxy. My ophthalmologist has already said I will need cataract surgery very far down the road, nothing to worry about now (I am turning 55). In terms of energy and side effects, so far so good, it has only been a couple of days but I feel great.

[Cal66]

Sorry I meant if you do go on hydroxichloroquine