PMR question.

[remission]

I am currently at 2 mg and my pharmacist was suggesting I might want to speak to my doctor about methotrexate in order hopefully get off of the prednisone and I’m uncertain, it’s kind of a case of the devil you know. Has anyone else tried this successfully? From what he told me, I would have to give up my wine, which I do admit I enjoy and I lost a lot of hair on prednisone, but finally it has slowed down frm falling out and also afraid switching to methotrexate my result in more hair loss, then there is the threat of liver damage etc. Anyway, would love to hear some feed back... thankyoy

[YuliK]

Dear Remission

You should read this article about Fatty Liver Disease.

My Rheumatologist wanted me to start methotrexate and I told her that I have fatty liver disease...so it’s out of the question.

There are a few people on this helpful forum whom I’m sure will gratefully advise you..

creakyjoints.org/comorbid-c...

YuliK 😷

Good luck. Please let us know how you are getting on.

[remission in reply to YuliK]

Thank you so much for your respone

[DorsetLady PMRGCAuk volunteer]

Why on earth would you consider adding in another drug when you are on such a low dose of Pred?

As you have had PMR less than 2 years (profile says Aug 2019 - is that’s correct?) why are you fretting about being at 2mg - most people would be delighted to be that low in that time.

Although looking at previous posts you do seem to be hell bent in getting off Pred - can I ask why?

On profile you say “determined to find alternative drug to treat my condition” - well sorry, but there isn’t one!

[remission in reply to DorsetLady]

Ws checking out the methotrexate only because the pharmacist suggest it was a much better answer than prednisone and I suspect I am no different than everyone else on the forum with PMR, we ultimately want to be off of steroids, because it does have long reaching health issues; I was just seeking information for an alternative, that’s all. I am very pleased that in less than two years I have managed to get down to 2 mg and I am very active....but there is always a part of me that wants my old life back....

[DorsetLady PMRGCAuk volunteer in reply to remission]

Of course you want your old life back - we all do - and you will get it one day.But in the interim you have to live with, and manage your PMR, and the easiest way is to be on the correct dose of Pred to do that.

I was on considerably higher doses for a lot longer than you, and now nearly 5 years after going into remission (!) I don’t have any long reaching health issues caused by Pred.

What I do have is sight in one eye which was saved by steroids after the other was lost to misdiagnosis of my illness.

I do know the side effects of Pred, but any drug has them....and as you say, better the devil you know.

[AdoptMeow in reply to remission]

I'm so pleased for you to be able to maintain at 2mg. Methotrexate can "have long reaching health issues" also. After nine months of urging from my rheumatologist, last summer I tried a one month prescription of 10 mg each week along with daily 10 mg of pred. My pain and mobility worsened with each dose, had to quit my undemanding part-time job, and I have not recovered from it yet. I'm glad that it helps some people, but we should keep it mind that it's a powerful drug that can adversely affect those with multiple conditions, and not like just trying a new flavor of ice cream!🍦

[remission in reply to AdoptMeow]

Thank you, I know and I am grateful that at 2 mg and the odd Tylenol that I feel pretty normal....

[AdoptMeow in reply to remission]

That's marvelous!!! I haven't felt normal since 1983, when a virus nearly killed me and resulted in fibromyalgia.

[mgrogers99 in reply to remission]

I have been on methotrexate twice and being a retired RN did not want to take it. I'm now using the injectable methotrexate for the sole purpose to reduce the prednisone. I'm on 20 mg and was diagnosed 22 months ago. I want to decrease the steroids so much that I was willing to try methotrexate again but only the injectable. The oral version made me very sick. If I were you, I'd be so happy to be on 2 mg prednisone,

[SheffieldJane]

It’s a bit late to need Methotrexate and it s side effects to boot. You are on a relatively harmless but very useful Pred dose. It is the policy of one of our highly respected Rheumatologist’s to keep his patients on that kind of dose to prevent flares, indefinitely. I would stay as you are until something shifts and you can drop the last little bit. Resist unnecessary pressure. The wine will contribute much more well being ( within reason). 😂

[Janstr]

I considered going on it at one point, but understand that it leaves you more susceptible to “bugs” going around. Would you really want t to on do this in these days of Covid?

[Sallyaches]

Luckily the Pharmacist can not prescribe. I took Methiotrexate because I was needing a much higher dose of Prednisone and finding it difficult to taper. It worked in terms of reducing the Prednisone. But I had bone marrow suppression due to it, picked up an infection and ended up in ITU with sepsis. It had to be stopped PMR flared and I was back on a high dose. Luckily the kidney failure has resolved. Why risk a new drug when you are on so little prednisone and have been able to taper successfully?

[YuliK in reply to Sallyaches]

Oh my goodness Sallyaches, that must have been a terrifying experience for you.

I sincerely hope that you are now fully recovered. 🙏

YuliK 😷

🌹🌹🌹🌹

[Suetum]

When we say we want our old life back we have to balance it with where we are. In my case five years older! Pred has given me a relatively pain free life and I have learned to love it! I am at 2.5 and maybe won’t get below 2 have tried a few times .

[Constance13 in reply to Suetum]

Never heard learned to "love" it!!

Accept it- yes!🙃

[DorsetLady PMRGCAuk volunteer in reply to Constance13]

Well I did - or at least at the very beginning!

[YuliK in reply to Constance13]

Constance 13 good afternoon.

I can totally agree with Suetum. I love it too, especially after increasing by half a mg , and I can get around pain free, more than I did before the increase.

I don’t love the PMR, but I love the helper. 😉😁

[diana1998]

You are sooo lucky to be down to 2mg in such a short time. I would never add methotrexate into the mix now. If I was on 2 (I'm on 4mg) I wouldn't care one jot. My neighbour got off pred and later pmr symptoms returned and she had to start again tapering from 8mg. It's never wise to rush. The pmr beast hates that.

[SnazzyD]

Methotrexate does have its place but comes with a number of potential issues and requires higher levels of monitoring of liver, kidney and bone marrow function. In your case at such a low dose, the risk to benefit comparison doesn’t stack up in my view. Bear in mind also that even if you did take Methotrexate you still may not be able to reduce that much more quickly without ill effects because of your adrenal function possibly not being able to keep up. Although the difference between 2 and 0 seems so tiny, in adrenal terms it can be a significant hurdle. Methotrexate is not involved in the return of adrenal function so you might end up no better off in Pred terms but with a more complicated medication landscape as well. For those who are stuck around and above 10mg for whom adrenal function is a more distant consideration it seems more appropriate.

[Telian]

I would love to be on 2mg pred. My former well known Rheumie was happy to leave patients on such a low dose as maintenance. I stayed on 3mg for 18 months then had a flare out of nowhere. As for introducing Mtx at this stage it’s a no for me and many others I’m sure. Would a Rheumie advise that - wouldn’t think so. Think the wine, in moderation, will do more good than another potent drug.

[Mollbhan]

Well you are certainly getting plenty of well meaning advice, I have reduced to 5mg pred daily and also take 20mg mtx weekly, my rheumy hopes I can eventually stop the pred altogether as long term pred is more harmful than long term mtx,( who am I to argue). I get monthly blood tests for liver function and have never had any side effects from the mtx however I sometimes wonder if the mtx is doing anything at all as I am never completely clear of my RMA. PS. I still enjoy a glass of plonk or a dram every other night.

[GerriMc]

I found MTX very useful for getting past 17.5mgs, which I was stuck on for months. However, I don’t see the point if you’re only on 2mgs. The side effects of Pred are minimal at that dose, far less than those of MTX. If I were you, I’d avoid it.

[PMRpro Ambassador]

If I were at 2mg (or indeed anything under 5mg) NOTHING would induce me to add methotrexate to the mix. The potential adverse effects are far worse than anything 2mg pred will cause. Prof Dasgupta told us last summer he often keeps patients at 2-3mg as it reduces the incidence of relapses.

It sounds to me as if your pharmacist knows half a story - PMR/GCA do not necessarily respond to DMARDs. MTX might help someone get to a bit lower dose of pred because it has a potentiating effect on the pred and is probably worth a try if you are stuck at above 10mg/day. But one in 3 patients in general (it is used worldwide for RA) discontinue it because of the side effects and even more because it doesn't work for them. And potentiating the anti-inflammatory effect may also mean potentiating all the other effects of pred - which was what happened to me, I developed pred adverse effects I had never experienced with pred alone - including constant hunger and weight gain! And hair loss, it started falling out in chunks after a week!

Pred is the mainstay of management of PMR and GCA - methotrexate is a mainstay of managing RA, it is a DMARD, a disease modifying anti-rheumatic drug, which reduces the risk of joint destruction by the autoimmune effects in RA. It is used in certain other a/i disorders as well, The mechanism of PMR/GCA is different, causing vasculitis rather than arthritis and there is no joint damage. You can't say methotrexate is better than pred - it is horses for courses. It's like saying a chisel is better than a hammer - each has its place but a chisel isn't much use if what you need to do is put a nail in the wall ...

[MrsNails]

I take MTX but would not consider MTX if l was only on 2mg (l wish)

Prof Dasgupta recommends keeping Patients on 2mg indefinitely to keep PMR at bay......

I personally don’t drink Per se as l’ve had issues with my Liver Enzymes but the benefits of MTX outweigh the effects of High Dose Pred for Me!

No Rheumatologist would suggest incorporating MTX when in 2mg of Pred unless you had RA

Kind Regards

MrsN

[remission in reply to MrsNails]

As always this forum has been extremely helpful and knowledgeable. I respect your advice and I do not have a Rheumatologist, just a very young GP and even younger pharmacist, all trying to do their best with what they know, I check with this forum before doing anything, because you have walked the walked ...so thanks again, I shall stay the course in my prednisone.

[MrsNails in reply to remission]

I used to have a ‘Young’ Locum Pharmacist who always used to get a bit stressed that l had Pred & MTX on my Regular Prescription but she was happy when she realised l understood all the risks etc.

A good, on the ball pharmacist is worth their weight in gold, l’ve had a couple of Appointments with Mine to make sure l’m taking my Meds at the optimum time, so very well worth while!

[kulina in reply to MrsNails]

MrsNails, I agree with you, no Rheumatologist should suggest incorporating MTX when in 2mg of Pred but they do. I was on 4 mg Pred and doing great, reducing, and my Rheumy, instead of being happy with my progress, recommended MTX. Of course, I refused MTX and was very disappointed with his reaction. I'm down to 3.25 mg now and doing well. MTX has it's own scary side effects.

[MrsNails in reply to kulina]

3.25mg Pred is great, as l mentioned Prof Dasgupta likes to keep his patients on 2/3mg indefinitely to keep the PMR at bay!

Good Luck 🍀

MrsN

[kulina in reply to MrsNails]

That does make sense. I had another doctor who thought I might never be off of Pred, just like Prof Dasgupta recommends. Oh well, it is what it is. As much as I don't want to take meds, I want to function relatively pain free. I promised myself to never forget the pain and stiffness at the beginning of this journey so I can appreciate every pain free day.

[jinasc]

Interested in the alternative?

My Mother had GCA and PMR over 29 years ago and there were no steroid sparing agents at that time. Little research was being done at that time. Much more has been undertaken in the past 15 years and is still ongoing on into cause and cure.

So far no alternative has been found to work that I am aware of, that is why I am interested.

BTW, we never can get our 'old life back'. Father Time does not work that way. We age everyday and have to accommodate that fact.

[Constance13 in reply to jinasc]

Sometimes I think I age every hour!!

(Having a particularly painful day).🥴

[jinasc in reply to Constance13]

Ah, I fell down two days ago and can't count the new aches, never mind the bruises.

My neighbours came pronto and hauled me up using a Wimpy 🏗.

[Constance13 in reply to jinasc]

Oh dear! We ARE getting old, aren't we?

[jinasc in reply to Constance13]

Youngster I clock up another year next month - 🥃🥂🍷🍸🍾

[Constance13 in reply to jinasc]

I know - I have it written big in my calendar. xxxx

[YuliK in reply to jinasc]

Oh dear Jinasc, that’s quite a shock to the system. Hope there are no broken bones.

Sorry to read that, feel well quickly.

YuliK 😷

🌹🌹🌹🌹

[jinasc in reply to YuliK]

It is amazing what a drink or two of what those medieval monks discovered.

No bones broken just felt stupid...........and I am really OK.

[DorsetLady PMRGCAuk volunteer in reply to jinasc]

Hope you soon feel better - I CAN empathise after my escapades in January!❤️

[YuliK in reply to Constance13]

Sorry to read that Constance. Try putting a hot water bottle on the most painful area, and just rest.

I know about those days, it’s a double whammy.

YuliK 😷

Feel better soon. 🌻🌻

[Constance13 in reply to YuliK]

I need a "hot water" bath (or Sauna). There isn't such a big water bottle.🤪👵🏻

[YuliK in reply to Constance13]

Hot shower possibly. 👍

[Constance13 in reply to YuliK]

Not the same - doesn't reach the aches in the right places and not long enough. How I miss soaking in a bath.😒

[Fieldofdreams]

After 12 months on Pred I was persuaded by my rheumatologist to go onto Methotrexate as every time I dropped on Pred I felt awful. I was diagnosed with GCA in Aug 18, was on 60 mg. Got to 40 then started meth 2019 for 7 mths. If you want your old life back DONT do metho. I am still wearing a wig after my lovely long blonde hair fell out and broke off. A mouthful of wine made me feel awful. Both achilles tendons ruptured... Another 18 mths on I am just walking without a stick and I am a choreographer and theatre director. I am now down to 5 mg of pred and have v thin skin, bruise v easily BUT hair stopped falling out... Listen to Dorset Lady... I was adamant I'd be off Pred in a year.... it isnt that easy. I lost all my work, now I still cant dance but a slow taper has resulted in no more flares. I would do anything to get my life back. I was 57 when diagnosed. Lots of vits, good diet, low carb, no sugar. Take it easy but walk away from metho.

[remission in reply to Fieldofdreams]

I feel for you, so sorry for all you have been through and I appreciate your honesty and I hav no intention after all I have read of going into the metho

[Bailybiscuit]

I have been on steroids for over 7 years. I have also been on methotrexate about 4 years. My rheumatologist is happy that I am as low as 4mg pred. I started with pmr and then they diagnosed various types of arthritis. I think it is still thought I have pmr as well as it is the first complaint mentioned on the letter that gets sent to my GP after a hospital visit. I would not consider methotrexate at such a low rate of pred.

[remission in reply to Bailybiscuit]

Thank you, everyone is so kind in this forum and informative and there is no way in light of what I have been told that I will try the methotrexate

[Fieldofdreams]

Stay positive. you will get better. Peace. x