Trying turmeric and fish oil as anti-inflammatory - PMRGCAuk

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Trying turmeric and fish oil as anti-inflammatory

Linny3 profile image

I experimented for over a month with a high amount of turmeric and fish oil to try and lessen the inflammatory load in my system and hopefully to get a little more pain relief.. I was also taking 'relief factor' as seen on tv. I also cleaned up my diet and cut out foods that cause inflammation and added foods that were better for me.

I had blood work done the other day and the results were miserable. My CRP and SED RATE were the highest they have ever been and my Parathyroid was flagged as low and it has never been low in my life.

I was so mad I threw everything away. On top of that I didn't even get any pain relief.

Not sure what all this means for me, but it can't be good.

So Very frustrated with it all. I just want my life back.

Thanks for listening to my grousing.

62 Replies
PMRpro profile image
PMRproAmbassador

So sorry - I think there are plenty of others who have had similar experiences looking for alternatives to pred. The bald fact is that pred works - little else does. I'm often accused of being on big pharma's side, even of working for them! But the evidence speaks for itself.

Linny3 profile image
Linny3 in reply to PMRpro

I wasn't trying to replace pred. I know that is the only medication for pmr. I was hoping it might help me with the reduction of pred which I haven't been able to accomplish in years.Oh well, I tried.

I think I have settled into the idea that I am not getting off of pred or reducing it unless I try another dmard. If I don't do that, I will suffer the ongoing consequences of high dose pred. over a long time. Mainly for me it is thinning bones with fractures and skin disorders and high blood pressure.

Thanks for the respose

PMRpro profile image
PMRproAmbassador in reply to Linny3

I wasn't suggesting you were - but there is very little that helps reduce it unless it has the same effect as pred. The best approach is to taper very very slowly - in small steps and long timescales. Once you start to yoyo the dose you really are in trouble - I don't know why, there is little logic to it, but that is what happens.

It took me over 4 years to ever get reliably below 10mg.

Carver63 profile image
Carver63 in reply to PMRpro

i am not diagnosed with PMR rather a laggering GCA. i am taking supplements and diet considerations. it has stabilized the "yoyo" of pred , stress and GCA so i am led to understand that good things in this mess we are in will take some time, there will be bumps in the road and if we look after ourselves the best we can that more good is obtained from the effort👍

Constance13 profile image
Constance13 in reply to PMRpro

Bet you would like to be one of them (pharmas). Who wouldn't? We all really know Pred is best, but it takes a long long time to realise it.

Grammy80 profile image
Grammy80 in reply to Constance13

That is such a good point~!💖

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Some supplements/foods do help a little with inflammation, but TBH I think they just tinker around the edges for most people...

Particularly with PMR or GCA, a much more serious substance is required...and that is Pred! ... and at the correct dose....if you aren't getting pain relief then you either aren't at the right dose, or trying to live life as if you don't have a serious systemic illness, or have issues alongside PMR.

Linny3 profile image
Linny3 in reply to DorsetLady

I just felt if it helped at least a little it might help with pred reduction. I have not been successful at that for years. I was not trying to replace the pred.Thanks for the response.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Linny3

I know you didn't mean to replace Pred, but to assist it, but not sure it does……some may say it helps, but if you don’t try you don’t know so it’s always worth a try.

Linny during those four and a half years since you were diagnosed have you been yo-yo-ing your doses of Pred?

Linny3 profile image
Linny3 in reply to jinasc

For the last 2&1/2 years I have been trying the slow method. I decrease by 1/2 mg and wait for as long as it takes to be able to decrease by another 1/2 mg. Started from 20mg and the lowest I got was 14mg then a terrible flare started. I was back to 17 to get it under control. Then it took me a very long time to start reducing again.About 2 &1/2 months ago I started reducing from 17mg now at 15 &1/2mg.. Have been there for 15 days and the last few days I hurt from head to toe with neck and hips the worst of it. So today I went to 16 &1/2 to see what happens and now it is so much better. I was actually out today and ran a few errands. So I will stay at 16&1/2 for a few days and reduce to 16 and see how it goes.

I don't think I yo yo a lot?

PMRpro profile image
PMRproAmbassador in reply to Linny3

Something few doctors ever tell their patients, probably because they aren't aware of the fact, is that the amount of pred we absorb varies a lot. It is called the bioavailability. They assume it is 70% across the board but in fact it is said that it varies between 50% and 90%. If you are a 50% person you appear to need a lot more pred to keep things under control than someone who is a 90% person. almost twice as much. Your 15mg might be someone else's 9mg - and you probably wouldn't be as concerned.

Linny3 profile image
Linny3 in reply to PMRpro

If only there was a way to find out how much is actually available to use for any given individual..

PMRpro profile image
PMRproAmbassador in reply to Linny3

It is the purpose of the titration of the dose - even if you knew you absorbed 60% f what you take, that still doesn't tell you anything about how your body reacts to a dose of pred or how active your disease is. So you do it empirically: what dose works for this particular patient. You can measure it - but it is complicated and costly.

Avadip12 profile image
Avadip12 in reply to PMRpro

That’s a very interesting point , but I would say with my 15 yrs experience of seeing 5 different consultants . Their only aim was to get me off steroids. Not one has suggested that I stay at a level I was comfortable at. But after my last discussion on here . I have finally decided to stick at 5 mgs. I have weighed up my need to lead a life against the risk of steroid long term effects ( of which I don’t have any at moment ) I am sick to the back teeth of yo yo illness. And all so after reading on here I am now trialing split dose 2.5 mgs at 10 pm and same at 8 am. One week in , and no difference to my morning fatigue yet. I will give it 6 weeks . Thank you for listening

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Hi. Me again. Sorry I know I'm always asking things. I spoke to Dorset lady the other day about feeling 20 isn't enough and she said maybe try 22.5 but ask the doc as I'm knew to this etc. Rang the surgery. Doctor who's been seeing me not there so spoke to another.

He says can't up them. 20 I'm on is high should be only 15! I said about this forum etc knowledgeable people on here. He said Just try, give it chance for couple more weeks and go to the review with my doctor after bloods on 16th (doctor appt 19th) cos on his notes it says refer to rheumatologist if not under control. I said but the forum they say it's 25 can go to but higher than that yes unusual he all could be foreigners different guidelines. I said it's PMRCGA uk. He went oh right. Well I'll look at the guidelines. No guidelines say no more. Rheumatologist can put you up but we can't condone it. So give it chance as Ive only been 9 days on 20mg. Next step if not under control is the referral. I also said I'm just putting out there if not responding as I should is something else like the menopause causing it (thread I saw on another forum) could it be that if not responding could it be hormonal he said it can and can be quite debilitating but my inflammation markers are up so wouldn't be with that. (Why if joints affected). He Said but if steroids don't get under control snd turns out need to look at other things we will consider that as option. He's made a note. I said I do seem to be text book PMR when I look at symptoms. He agreed. So that's that until my next appointment. Is it true that only rheumatologists can put the dose up. Am I being impatient. My hips are hurting amd my neck and shoulders amd arms hurt when I press the computer on at work. Surely something should be happening by now. Is it normal to wait a month. I'm sorry I'm sending all this. It's just really getting me down.

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

Funny how guidelines are guidelines only when it suits them. They are not written in stone they say. Whichever way round it is.

Ask if he's seen this:

ard.bmj.com/content/74/10/1799

However - if you are going to work - that may be the reason it is taking longer/not as effective. Some people DO need a couple of weeks or more, especially if the dose isn't quite enough. Did you get any relief?

And there is always the possibility it isn't "just" PMR but a polymyalgic presentation of something else that is slower to respond to pred.

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Thank you. I did yes. And I can get off the settee without shuffling to the edge of it first now and out of a garden chair which I had to kind of rock to do before.

I'm worried it's something else again now which doesn't help. Amd yes work full time. Not an option at all to stop or reduce due to financial commitments etc.

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

The trouble is that when you work you usually need more pred to control the inflammation - it's a bit like having a permanent flare! I wonder if your shoulders and arms could be tight muscles from myofascial pain syndrome which is more common alongside PMR. Mine is helped by a good dose of ibuproen (800mg flooding dose) and a hot water bottle over the painful bit - and even with enough pred to work for me, my biceps don't like being asked to lift/carry anything or hold a phone for long! There are shoulder warmers for heating in the microwave that a lot of people find very useful

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Thank you so much. I shall tell the blooming doctors that it's likely I need more as I am working. I sit at a desk all day but very very busy. I shall look into myofascial pain too. Thank you

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

Have you had an Occy Health assessment of your work station? That is often a culprit in upper back and shoulder/neck pain - you are entitled to reasonable adjustments to your working environment to allow you to continue working under disability regs. Others on the forum can tell you more if you ask in a new post - I'm not familiar enough with UK employment law.

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Hi yes I've got a special cushion. Changed all my work stations around etc. Had high hopes for my two weeks hols that it would miraculously go (still going down the disc/tension/stress route at that point). Instead it was just as bad and it was then my friend mentioned PMR and the doctor agreed despite my age ! Honestly I've tried everything I can think of. Thank you for coming back to me. Amd sorry I've highjacked this to the original poster !

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

Don't worry about that - happens all the time!!!!

I guess your doctor would faint if you told him that the Hospitalist gave me 80mg Pred on 2 days. No symptoms of GCA but if I attempted to engage my ham string muscles 10/10 pain and I handle pain extremely well. Within 1 hour pain gone, onsite blood workup back to normal. It’s a MIRACLE! Not. Way too much Pred for my symptoms. But when I hear about doctors saying can’t go to 25+ mg/ds I say BS in my mind. Been there, done that! If I survived the dose the first time if pain warrants it I can again. Did I have side affects as a result? Yes, was more hyper than my norm. No problems sleeping, 6 months in, the internal pressure in my eyes was 31L/24R, my eye doctor prescribed drops for my left eye. Dropped it to 24 (it’s now 18 so next visit this fall she’s going have me stop, wait 2-3 weeks and come in to check), blood pressure jumped so on the lowest possible does of med and it’s normal. I’ve had GERD for over 20 years so on Prilosec 40mg 2x/d and no change as a result of being on Pred. My 1st DEXA scan (after 6 mos on Pred) showed just barely breaking the threshold for Osteopenia. My next scan will be in October. Hoping the Ca+D3+K2 regiment doesn’t let it get worse.

I’m at the stage now where easier to ask for forgiveness than permission.

That may not be wise with your doctor, mine’s at a point where he’s been letting me manage myself. He knows I’ve been doing a lot of reading and resources here. I think he knows I’m not going to do anything stupid.

Wow. So 25 really isn't breaking any records is it. Yes they'd have a fit I reckon. And I only wanted to try 22.5! Just can't figure out whether I'm still supposed to be in pain. My arms sometimes hurt without doing anything and my groin on getting up and hips on walking. The initial stiffness getting up from bed isn't there and my neck feels better to move it. But I lift my arms and my neck feels like there's a brick in it pulling. Weird. Definitely improved but after two weeks on 20mg and four days prior to that on 15mg I thought would be pain free. It's a bloody horrible thing to have isn't it. And well meaning friends are still telling me I've probably just pulled something. It's because no ones really heard of PMR. This wouldn't be suggested Re anything else. So that's getting me down too. Guess I'll plod on till mid August when I see the doc and have bloods checked. Thank you for replying.

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

You may well have back muscle problems due to myofascial pain syndrome and/or bursitis - both are more common alongside and thought by some experts to be part of PMR. MPS does improve some with higher doses of pred - which may be why some people need more pred - but it tends to take longer and is quicker with some more targeted management in the form of therapeutic massage/manual mobilisation (which isn't likely on the NHS) or local steroid jabs.

But are you also doing your bit by resting and giving your body a chance? Feeling even a bit better is not a licence to try normal activity!

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Hi. I'm working but when I come home I am being really lazy which I hate but I do wonder if last weekend doing my parents garden wasn't the best idea. Not told them I have this as don't want to worry them as we lost my brother a few years ago. I bagged some clippings up after my husband cut the hedges etc. I did say I may pay for this. Must have felt ok to do it and forgot maybe shouldn't. Hard accepting can't do the simplest things isn't it. What is bursitis. Heard it mentioned but not sure what it is. Also a guy at work had it in his knee said was excruciating. Can't say I'm in excruciating pain if I'm honest. Had a lot of chiro amd massage pre diagnosis when all thought was "mechanical" maybe that made it worse as was after that the shoulders joined in. Months ago all that though. They said my muscles were tight but they tense if an injury and put it down to that. I paid for it as the NHS physio referral still hasn't come through. I'll take your advice amd slow right down out of work. Thank you as always

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

webmd.com/pain-management/a....

No - gardening really wasn't a good idea!!! Being on pred doesn't cure anything - it relieves the inflammation and so moderates the symptoms so you get a better quality of life until the underlying autoimmune disorder burns out and goes into remission which it does for most people in a few years. However, the autoimmune part of PMR that creates that inflammation continues in the background, attacking body tissues, a bit like having a permanent dose of flu, and leaving the muscles intolerant of acute exercise. You have to identify your limits - and stick to them. It is difficult and for some there is no choice if they can't delegate those activities - but adaptation is essential or nothing improves.

NHS physio referrals are probably not much use unless it is to a specialist team like they appear to have in Leeds. I use physio a lot as here everyone seems to have heard of PMR, they are all aware of the limitations as a result and therapeutic massage and manual mobilisation are major features, The Pain Clinic is also fantastic here (except in Covid times as it is run by the ICU staff) and the lady does a lot with needling to relax the muscles. NHS physio usually takes the form of being given exercises to do alone - and you often can't because the muscles are too tight to be able to do repetitive actions. Massage often makes you feel worse before you feel better and it MUST be approriate or you can end up with an acute muscle spasm which is excruciating - the German call it a witch's shot which expresses it better than the English "lumbago"!! But done well it can be fantastic.

Buttonshutton profile image
Buttonshutton in reply to PMRpro

Witches shot. Love it ! The body is a strange thing isn't it. I wonder why the immune system has the facility to attack itself in the first place. I'll lay off the gardening. Blooming hate it anyway. I'm in Sheffield. Not bad here plenty of hospitals so hopefully will get a good rheumy when I'm referred. Thank you again !

PMRpro profile image
PMRproAmbassador in reply to Buttonshutton

Like anything else, it can go wrong - no-one knows how it happens though as far as I know. It seems to lose the ability to identify the body as "Self" - but the how or why is still being elusive ...

hopkinsmedicine.org/health/...

jinasc profile image
jinasc in reply to Linny3

Thank you for the answering my question. That has put my mind to rest.

When you were out today, I hope that yo took your time and are going to do nothing.

Sometimes it helps that when you take a drop to take it easy for a couple of days - yes even at half a mg at a time.

Boss302Fan profile image
Boss302Fan in reply to Linny3

Last paragraph you stated:

“So today [7/28/21?] I went to 16 &1/2 to see what happens and now it is so much better. I was actually out today [7/30/21?] and ran a few errands. So I will stay at 16&1/2 for a few days and reduce to 16 and see how it goes.”

You’re attempting to drop too quickly. If it were me and 16.5 mg had me free of pain (“… now it is so much better.” I assume you mean pain of 0-2/10) I’d stay there for 2-3 weeks or until zero level pain, then “Start” the taper using DSNS or DL’s simple taper toward 16mg. If “I” was in that dosage range I’d try 1mg decreases but based on your experience it’s hard to say. My “perception” is that you get impatient and make a jump. That may not be true.

Anyway, if I’m in a taper and experience 0-2/10 pain in the taper I’ll tentatively stick with it as long as it doesn’t increase and then once I’m at a full week at the new dose I will not “start” a new taper until I have gone at least 1 week with zero pain! When I recently tapered to 3.5mg/d I actually stayed 3 weeks at that dose before zero pain and then I started taper toward 3mg. I’m finishing up week 5 of DL’s simple taper this Saturday and because I’ve had 1-2/10 shoulder pain in the morning that lasts about 15 minutes I’m going to stay at 3mg for however long it takes to go to zero. If a year from now I still have a 1-2/10 pain I’ll still be at 3mg or, if I start getting pain, I’ll increase.

I’ve accepted that I’m not controlling this disease, it’s controlling me. So whatever dose it takes to manage it is what I’ll do. I can only hope I’ll be one of the fortunate ones where within another year (3 yrs total) it will subside. If not, oh well…🤷🏼‍♂️

So disappointing, to have it go the opposite direction!! Whatever about it not helping! I feel your frustration, i wish sometimes i had all the money back that ive used on supplements for ME and fibro. Sometimes i think its just something to cling on to a bit of "hope"! As for PMR, its a slow road unfortunately.

This is just a thought - if your blood readings were seriously out of step with previous readings, could they possibly have been mixed up with someone else's? I have a suspicion this happened to me with my new doctor because my regular bloodwork puzzled him - much more going on than he expected - and included my highest CRP ever plus problem with liver, never seen before. He sent me off for more tests and when I phoned to get the results I specifically asked about a couple of things that had worried him in the previous results, and he basically shuffled off my question - nothing to see here, move along. (CRP back to what is my usual slightly too high, and nothing wrong with liver.) At around the same time I got a phone call from a pharmacy which is not mine telling me there was a prescription ready for me. Only it was for someone else, I had no new prescriptions at the time, and it took me a while to convince the pharmacist I wasn't a cognitively impaired old woman.

Sorry to hear about your blood test results. I think things like tumeric, omega oils & diet can help in the long term (certainly won't do any harm), but they take longer than a month. And as has already been said, they are not a substitute for pred. Maybe try for a bit longer? Good luck!

Karenjaninaz profile image
Karenjaninaz in reply to MhairiP

I developed anemia after Turmeric; there is a Chinese paper which note decreasing blood count when used for autoimmune diseases. This happened in my case. I actually took it before I was diagnosed when recommended by the pain doc who was doing my bursitis injections. I felt worse on it.

I took omega acids for years and it too did not work but just worsened my hypoglycemia.

Feel better though on a high protein, low carb diet. It stabilized my hypoglycemia.

It’s all such a roller coaster, Linny3. I think we all hate being on Pred, but it is what it is. Only from my experience can I say that tapering slowly is key. I also try & maintain a relatively healthy diet.

I was smug when I got down to 5, then 4, and then when I hit 3 - bang! I feel like I’ve aged 10 years. I have discomfort in my neck and shoulders that I’ve never had before. Is it the PMR spreading or is it something else. Or maybe just a sign of being 69.

Just be patient....

PMRpro profile image
PMRproAmbassador in reply to Doraflora

It's your body telling you that you have gone too low on pred - you aren't reducing relentlessly to zero, you are looking for the lowest effective dose and for you that was probably 4mg. Which is a low enough dose not to need to worry about being at it. One doctors likes to keep patients at 5mg for up to 9 months and that seems to help the onward journey - mixed in with the adrenal factors.

Doraflora profile image
Doraflora in reply to PMRpro

Well, I’ve been back on 5 mg for at least a month now but the aches have got so much worse this last week or so. I’m speaking to my GP next week and I might suggest going a bit higher again. Also I’ll ask for bloods to be done.

I’m even going to ask if I can be referred to a rheumatologist. No one at the surgery has offered it!

Thanks as always, PMRpro, for your advice😁

Thank you for trying this out and sharing your experience. I also try to introduce a foodpattern that should be anti-inflammatory and low carbohydrate to keep also my weight under control and give me enough energy to exercise, hike and bike.The daily mail from all of you at pmrgcauk.com is so helpful. Thanks to everyone contributing with quations and answers.

I take loads of vitamins alongside Pred ( currently 15mg) for GCA - absolutely no idea whether they do any good but, like many others, I feel they may, and probably don’t do harm

PMRpro profile image
PMRproAmbassador in reply to Frewen1

Too much of certain vitamins is as bad for you as too little. And vitamins are better absorbed/utilised from dietary sources than synthetic versions in pills.

Frewen1 profile image
Frewen1 in reply to PMRpro

Yes, I know, but...interestingly, before GCA I always noticed my arthritic joints got worse when I forgot to take glucosamine - since Pred I have much less joint pain of course ( thumb joints, ankles etc) and if I miss vits for a few days I don’t notice... obv, I suppose

Linny3 profile image
Linny3 in reply to Frewen1

I know a lot of people who take glucosamine and get the results you do. I have never been able to say I take something and I feel better for it.

Linny3 profile image
Linny3 in reply to PMRpro

That is for sure. I am making an even more concentrated effort in getting what I need from food sources.

Linny3 profile image
Linny3 in reply to Frewen1

After 5 years of no change in my health, I dumped all my supplements. I only take my bone supplements and my pred. I have to say it was very freeing. I will also be saving a TON of money. I have been using supplements for 40 years and my health has done nothing but go down hill. Maybe it would have happened quicker without the supplements? Who is to say?

So sorry , I totally understand ,during my 15 yrs of PMR I have been on lots of different personal trials , but always end up relying on the magic of steroids.

I am sorry you didn't find relief - however I was always taught that with Natural Remedies they need AT LEAST three months trial. I can understand why you threw them out though.

Well done for trying Linny! I agree with MhairiP above who says that natural supplements take at least 3 months to make any difference at all. I think so mnay of us, determined to beat PMR, have tried all sorts of things - I know I have and spent LOTS of money because they're never cheap are they? Unfortunately, we all agree that pred is the only answer and I am so grateful for this wonder drug despite my awful weight gain and purpurea all over my arms! At least I am relatively pain free apart from stiffness which never seems to go away. But, three cheers for this fantastic forum! I don't know what I would do without your invaluable advice and support.

Hi Linny I’m so sorry to hear you are so disheartened by it all, I’m sure you would have been doing some good to your body and your cells so all your efforts are not for nothing. I’m not sure how you are taking turmeric but it is dissolves in water so you need a fat for it to be effective I.e yoghurt plus black pepper to help it produce the highest benefit. My method is turmeric one teaspoon, mixed with natural yoghurt, a few pinches of black pepper and fruit. I’ve also found high levels of vitamin c are working for me 1000mg and the omegas too these all help my body but are no miracle cure. I’ve also had to increase my water to having 4Ls a day. It also must not be used with blood thinners. I’ve got to this point after my drs are taking ages to diagnose and medicate and I’ve had to find my own way with just diet, supplements and walking (this wouldn’t have been my first choice, I have been asking for medication for over 8 months) I always try everything my drs suggest and work with them as much as possible. I hope you find something that works well for you and your body x

Thanks for the reply. I have taken most supplements for a very long time. The latest trial was mostly taking more of what I had been taking but taking it more often, like twice a day instead of once a day. Plus adding the same product but a different maker.

Hi Linny: I have been trying all those same things and its never helped at all for me-- changed diet /supplementation etc-- has anyone else experienced improvements with the symptoms of PMR with changes in diet and taking supplements?

PMRpro profile image
PMRproAmbassador in reply to nickmits

Quite a lot of people who cut their carbs because of being on pred have said that when they stray because of a special occasion making them feel that a "treat won't hurt" they feel worse so one can only assume that NOT eating as much carbohydrate/sugar was actually making them feel better!

Honestly can't remember anyone claiming that any particular supplements helped PMR/GCA symptoms.

nickmits profile image
nickmits in reply to PMRpro

Hi PMR PRO-- are there diagnostic tests beyond the normal tests - that can check for levels that might attribute to PMR-- Im thinking about all the talk about gut health and microbiomes and tests like that can provide-- that can get right down to the nitty gritty of these levels-- do you know anything about these tests in the market place..like viome.com?

PMRpro profile image
PMRproAmbassador in reply to nickmits

You have to know what they mean - and that requires a vast amount of research. The microbiome tests haven't really achieved that level yet.

nickmits profile image
nickmits in reply to PMRpro

So have you discovered any other markers besides the usual CSR and SED Rate should maybe checked out to try to determine what might be attributing to ones issue.... Im still chasing a final diagnoses - cause my Reumy over the last year still does not think I have classic PMR-- as the pred has not been that affective for me-- its never reduced my pain and stiffness completely--maybe I have improved 50% on pred and he is working on tapering down now Iven been at 15 for some time now-- and the other day he thinks I should take Methotextrate so I can get off pred eventually-- but the research Ive done it looks like a nasty drug.

PMRpro profile image
PMRproAmbassador in reply to nickmits

Did you start with 15mg? If it didn't work well you should have been tried at a higher dose, up to 25mg is recommended in the guidelines from the BSR/ACR and exceptionally 30mg. If you don't get the inflammation cleared out at the start you will struggle to go lower. There is also no guarantee you will get of pred altogether by using mtx. It MIGHT get you to a slightly lower dose but it doesn't replace pred - if it did, they would use it instead of pred.

Markers don't tell you what is causing the problems - they are markers to aid monitoring but they are quite general, other things can increase them too. IL-6 (the most likely cytokine inflammatory substance) is possibly a better option but it isn't generally available and costs a lot more.

mtx is a bit of a Marmite drug - you like it or you don't, or maybe better, it likes you or it doesn't! MrsNails does quite well using it but even she struggles - she has a set of posts about in in the FAQs

nickmits profile image
nickmits in reply to PMRpro

Thanks for your details and help , like always....I started on 25 and i felt liitle less pain but still had pain-- now at 20 the pain is about the same. So I will check the other things your recommended.

I used ibuprofen to lower inflammation that I didn't have to get up to pee every couple of hours during the night, but this caused atrial fibrillation, so I tried tumeric/curcumin and got terrible diarrhea. I eventualy was diagnosed with Erdheim Chester Disease and put on chemotherapy drugs (Vemurafenib), which did lower my CRP, but mucked me about in every other way imaginable. But, it's keeping me alive

I did exactly the same and spent a fortune in the process!

It’s so disheartening ☹️

I truly hear you....I work so hard at being positive (GCA since 2019) but every so often given how I feel, other issues that come up and how do we treat them? What is being caused by what? I can feel this desperate frustrating feeling trying to take hold because I'm looking for now changes and answers. Then I listen to some of these long-term wise people and realize I'm in a long haul situation trying to bring back a me that is gone.

I kind of sit IN IT for a bit and itemize what I can do. You aren't grousing, that is such a normal reaction. I truly feel it, Linny3 but don't you get the sense that often, the disease is in control~?? Maybe that is what is tough. We are all in it together and thank heaven for this forum or I would have been in a luxury padded suite by now. Do take care.💖 M

Linny3 profile image
Linny3 in reply to Grammy80

Thank You

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