Hi, Im back again. Hubby spoke to doc today as he recently put him back on 7.5mg pred. Doc really doesn't like steroids and termed them "nasty things" and referred to the side effects. Hubby has to continue for another month but doc says if he thinks the PMR is going to be a long term thing he will refer him to a specialist who may put him on something else.
I have read on this site several people referring to "mexthorate" or something. Is this an alternative to pred or can anyone tell me what the alternative is. Doc did say that he couldn't prescribe whatever this alternative is but the specialist could.
Many thanks in advance for any answers
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During the past 3 years has your GP been yo-yoing your husbands pred?
Oh so Doc does not like pred..............well I do otherwise I would not be typing this response, I would be blind. There are loads of other illnesses that without pred.........people would just not be living any longer.
Me, I would be looking for another GP one who can read and understand Diagnosis and Treatment guidelines, published by NHS, BSR et al.
Methotextrate is a 'steroid sparing agent' that does not always work. It is also used in Rheumatoid Arthritis and is the 'gold standard'. As I understand it, originally it was developed for treatment of cancer many years ago. It does not replace Pred.
I wonder if that Doc of yours is referring to TCZ another steroid sparing agent, which is very expensive and currently for patients with problems in the treatment of GCA and reserved and limited to one year in the UK at present. It can only be applied for by a Consultant.
Thank you for your reply. I must clear up the confusion here but I didnt want to write a long story---the GP is excellent--very caring--quite young and very upfront and "with it". He does not want to keep hubby on pred any longer than is necessary. He said that if you have to be on pred then thats one thing but if you can come off it then its better to do so. He did say that pred can lead to diabetes, osteoporosis, glaucoma etc. He is well aware, and I understand your point, that many people would not be here without pred but if you don't have to take it then its better not to. Hubby had asked if there was a low dose that could be taken indefinitely as a maintenance type thing and it was this that produced his comments and led him to say he would refer him if it looks like it will be long term pmr. He came off pred over a year ago but had a flare up a few months ago. I do appreciate your response but felt I should defend the doc here and may have given a wrong impression in an attempt to be brief.He did say that he could not prescribe whatever this alternative was and that only the consultant could do this--which prompted me to enquire about the mex*** (cant spell it!!).
Could be that it is this TCZ thing. We'll see how he goes on. He's to continue current dose for a further month then have blood test and talk to doc again.
As jinasc says Methotrexate - or Leflunomide - may be used as a steroid sparing drug for PMR, but both come with their own set of side effects. As hubby has PMR, will not get TCZ - that’s only approved by NICE for GCA, not PMR.
Yes Pred CAN induce diabetes, osteoporosis, glaucoma etc, but it’s not a given, not everybody gets those side effects, and all can be managed - and most (as they are steroid induced) reduce /return to normal on low doses.
If your hubby has PMR, then he is unlikely to need a long term maintenance dose, the illness is usually self limiting , and if he thinks it never went away he may be correct. If he was only diagnosed 3 years ago, it probably didn't......the guidelines may quote 2 years, but it can last up to 6years, and for some much longer.
Yes it us, but if you read any patient info leaflet it’s much the same. Nowadays the manufacturers have to list every known side effect..litigation world we live in! But doctors seem to zone in Pred for some reason.
That is OK, things happen when you try to be brief, which I must admit has happened to me over the years.
I did not realise your husband had come off pred a year ago, how long had he had it before it went into remission?
I answered someone else when it looked like their PMR had re-surfaced. It does happen unfortunately however, from what I can gather the second bout seems easier to deal with. I hope you can get some answers soon.
You might like to read this, whether it helps or not I am unsure.
Hi--he had had PMR for 2 years exactly. Started on 20mg (within 3 hours of starting Pred it was like a miracle!!) then tapered down and after 2 years came off completely. I did post earlier that it had flared up again as I was enquiring if there was a low dose that could be taken indefinitely----a friend had researched extensively and said that 5 mg a day had no side effects and was quite safe etc and this is what he(the friend) did as a sort of maintenance--hence my enquiry. I dont think hubby's had completely cleared up but it was quite manageable so he carried on without pred until this flare up about 2 months ago. As you said above though, this is nothing like as bad as it was the first time. Main symptom was the extreme fatigue which I think troubled him more than the pain and stiffness. He is normally very active.Thank you again
I don't think this is a second time to be honest - the disease activity is very low and the few mg he was on towards the end was plenty to manage the inflammation, just zero pred isn't. It happens to a lot of people - maybe 6 months after stopping pred it starts to resurface - so his question about a maintenance dose was perfectly reasonable. If he can restart the pred, get it under control and get down to1 or 2mg on his own, as he obviously has done once, there is absolutely no need for any other medication, the adverse effects of under 5mg of pred are minimal and the lower doses even less. They have fewer adverse affects than mtx can in the long term and Prof Dasgupta often keeps patients at 2-3mg as it reduces the risk of a relapse like this.
Thank you for that PMRpro. This was actually the info I was after the first time I posted. Hubby did wonder whether 1mg would have any effect at all but perhaps if he continues as he is and then gets down to 1 or 2 mg again he could perhaps decide then. It was the adverse effects of 5mg or below that I was trying to ascertain. Can such a low dose keep PMR under control though once youve got down to that do you think? I do realise that everyone is different. Perhaps its a case of time will tell. I think it was about 6 months after stopping pred that it did resurface. Nowhere near as bad--- he said he genuinely thought he was dying the first time as he just couldn't get out of bed. And I was telling him he looked like a tramp cos he hadnt shaved!!!! He didnt tell me he couldnt get his hand up to his chin!! Felt really mean after 🙄
Oh yes - but everyone is different and some people will do fine on 1 or 2mg, others need lots more. If someone gets stuck on above 10mg, and that isn't uncommon, it is worth trying something else, but they have to show that you can't get down on your own first. Lots of doctors go about tapering like a bull in a china shop and far too fast and then tell the patient they can't reduce so need to try another drug. When going about things slowly and steadily will get you a long way. Was your husband fine right down to under 5mg?
Yes he was. Initially, after a year and having got down to 7mg ,he relapsed. Went back up to 10 and then came down 1 mg a month. That took him up to 2 years. He was fine when he came off completely although there were some just slight twinges but nothing he was concerned about. ( He has some arthritic issues which stem from an accident in his youth) Then a couple months back it started again, but as i said, nowhere near as bad. Doc didnt deem to be suggesting another treatment, I got the impression (listening to a one sided telephone call) that he would send him to a specialist if it didnt clear up and looked as if it was going to be a long term thing. I guess he will be on pred now for another 7 months as he suggests after another month to start reducing by 1mg a month so hes looking 7 months down the line.
More sense would be to get down to say 2mg if he can and then slow down - 1mg a month at that level is a big change. If he gets to 1mg I'd find a doctor who'll let him stay on that long term
Thanks again for that. His idea a short while ago was perhaps he needed 1 mg a day but then felt that so small a dose was probably not worth taking but clearly several of you seem to think it does help. He gets on pretty well with this doc and I feel sure he could chat to him again about it and doc would probably agree. A specialist he saw re a prostate issue asked him what dose pred he was on at the time and he said 4. Specialist said--oh thats nothing , its like being on none. So he was clearly unconcerned about any side effects resulting from such a low dose although I must stress that the medical issue here was nothing to do with PMR--it was a general thing to do with an operation. He wasnt implying it wouldnt do any good.
Oh yes - funnily enough a lot of specialist nurses appreciate that 1mg a day can be enough to have an effect but a lot of doctors struggle with the idea. The surgeon will have meant it was negligible for his purposes.
Hello plg. For info, I'm on 1 mg a day. I arrived at this dose last September. My doc wanted me to stay at this dose for 3 months which I did. I left it until January before trying to reduce v v v slowly. Don't know if it was bad timing, the fact we were moving house and dealing with a buyer's,solicitor who was a real jobsworth, or the PMR still rumbling on...or both. But the attempt at reducing failed. I'm back at 1mg and all is well. I'd definitely rather take 1 little white pill every day than struggle with any PMR pain.
Thanks for that mama!!! (less of the pig !!🤣🤣🤣) That is most helpful. I know everyone is different but presumably there can be little harm in 1mg a day and clearly there is some benefit to only 1.
Um - had you asked anyone here, we'd have said NOOOOO - don't reduce while moving, even with a nice and kind solicitor! It's one of the 3 top stresses in life I think ...
I know, I know.......but I just thought I'd do it really really slowly - doing really well until I got 2 mg a week, I think the final straw was when buyer's solicitor asked if we had drains!!! In the middle of Sheffield, a small block of 3 flats built in the 80's Duh!!! And she was using plans of the property demolished in 1980 to build said flats!!!
You have not stated your husband's age, however, whatever it is, remember we are always aging. Other problems such as arthritis etc. can become worse over time. I started on pred December 2019, and am down to 2 mg. planning to go to 1.5 soon. I have aches and pains. I take some Tylenol and if it decreases ailments, even slightly, I know they are not caused by PMR. Good Luck !
That's what I thought too, until I was virtually crippled again last month and the "osteoarthritis" was dealt with handily by 10 mg of pred! Even what I was sure was OA. Pain returning as I reduce. I had been handling it well with the assistance of low level light therapy again, but other life events beyond my control have caused several physio cancellations and I'm sinking again.
I'd been sure it couldn't be PMR because even acetaminophen seemed to help. Until it didn't.
Yes, I too have osteoarthritis and the pred does help. However, I will manage a certain amount of pain to avoid the side effects of the pred. Wish I could take something other than Tylenol, but cannot as have a small gastric ulcer. After I take the Tylenol I usually lie down to read for an hour or two. Occasionally use heating pad during this time. Usually I find I cang et up and proceed with the afternoon/even ing.
Lots of sympathy. Life doesn't seem to get much easier no matter what we do. At my age, I tell myself how lucky I am to open my eyes each morning, get up and have my toast and coffee
Thank you. It seems to be the crowning event in what turned out to be a more challenging year than I expected when we had first lockdown. Started with hurting one of my knees which put paid to a lot of my stress reduction - walking outdoors for exercise and fresh air, which we were allowed to do throughout even the strictest lockdowns, provided we weren't sick, and provided we hadn't been travelling (still in place). That occurred at the end of April and I went downhill in stages from then on until about the end of November when I decided to find ways to help myself more effectively. It's now mid-March and I'm much better, kneewise, but for the last month have been trying to stamp out a flare. Right now trying to figure out how best to experiment with splitting dose. I take calcium at bedtime and it helps me sleep. I sleep little enough as it is so don't want to deliberately wake myself up in the wee smalls to take half pred, and can't count on a regular wakeup. So bedtime would be the logical time to take that pred. You see my quandary? Considering, if I can actually remember, to take pred mid-evening and see how I feel in the morning. Unless I take at least 10 mg I am not well in the mornings, and that has never been a problem for me since I started pred. Dose always lasted 24 hours. Not keen on taking more than 10 for obvious reasons (blood sugar, ocular pressure, bone thinning and who knows what else I don't know about). Possibly splitting may help me reduce, so worth a shot.
How have you been? Have you survived all the upheavals in your state okay?
As I tapered to zero after five years on pred, but then had a flare (which is NOT easier than the first treatment I have to say, although my pain isn't as bad) I can attest to the fact that there are no side effects to speak of at the lowest doses. I was at or about 2 mg for several years and took a whole year at the end to taper to zero, with no issues, or at least none I attributed to PMR, I may have been wrong. Within a month I was back on pred and am now struggling to get back to 5. So if your husband is able to carefully taper back to 5 and then take his time tapering down further, I recommend he pause at his lowest best dose, be it 1 or 2 or 3 (my doctor had told me she was happy with me at 3, I should have stayed there!) then he should be absolutely fine, healthier than if he weren't on pred, and probably feeling very much like his old self, maybe not as energetic but without pred side effects.
I would say this would be a lot better than adding any other medication if pred has worked well for him.
Well thank you so much for that. I am very encouraged by the number of people who confirm that these very low doses are OK and do work. He hasn't read any of the info here----Im the one doing the research and passing on the info. I think hes listening though!!!
I can relate to your husband's pain and the inability to raise hands to either eat or comb hair. I wanted to die. Walking to the bathroom at night was so painful
I would just breakout crying. Thank God some of my worst symptoms have been relieved at 40mgs. pred. I'm to start tapering by 10 mgs tomorrow for another 10 days. I'm praying I don't flare as some of you have described. My endocrinologist wants me to reduce as I have osteoporosis. He has ordered several tests and has suggested Reclast for my bones if all tests are OK. I will post additional info when available. I pray for your husband and yourself as his care giver. Good luck.
Thank you for that. Sorry, I havent been on here for a few days and so only just spotted your response. Hubby was given Alendronic (??) acid tablets to take once a week as a precaution I understand against bone density loss. i think this is standard practice as a pal of his was on it too. I think its a massive calcium dose---you probably all know this though!!
Just read this post. What if any side effects has he experienced? I researched and the list is long and scary. Does anyone else have any experience and/or knowledge of this drug? My Dr. is recommending Reclast. Also any experience with this one? Thank you in advance for any help.
Reclast is zolendronic acid - I suggest if you can't find old posts by just looking that you raise a new post asking your question with both names in it. In the UK we tend to use the substance name and not the brand name so don't recognise them (no need for advertising in our system I suppose). There are differences between the various bisphosphonates so it is worth asking.
well he's only had one dose so far but he took it regularly when he started with PMR---before this last flare up--- but I do'nt recall any side effects at all. Think its just calcium basically but Im no expert on this stuff. Good luck.
No - not calcium at all, a drug that is supposed to fix the calcium into the bone tissue by slowing down the rate at which calcium is released - bone is a dynamic tissue with a constant turnover of cells. You almost always need to take calcium supplements when on these drugs because otherwise your blood calcium level may fall too low.
I was on prednisone for 14 months and it did a lot of damage to my body. My doctor told us that some people can tolerate it well but some people can’t. I am one of those.
thank you. It does suggest that this GP is not a complete idiot then😀😀😀 Hubby didnt have any side effects that we know of---the moon face died down and the slight weight gain was gotten under control.
If you have PMR and live in the UK there is no alternative to pred except adding methotrexate or leflunomide to the pred. Actemra/tocilizumab is only available for a limited time for GCA patients with relapsed or difficult to treat disease.
My Dr is honest enough to say she is puzzled by the pattern my PMR is taking .I have other issues going on, we are trying to separate them, as you know it's a complicated thing, nothing with me is straight forward atm! But onwards and upwards as they say !
He might be referring to Tocilizumab. It is good that a Rheumatologist is going to take over, the GP’s attitude will not help. Prednisalone is the only drug that is really effective against the symptoms of PMR. Many of the side effects can be mitigated with treatment and diet. Methotrexate is termed as a steroid sparer and it can help to reduce not replace your steroid dose. All these drugs, however, have their own nasty side effects.
Thank you for that. I'm not sure if a rheumatologist will take over---GP is seeing how things go after another month and if it looks like it may be long term he will refer him then. I was just asking really as I had heard/read somewhere--on here I think---of methotrexate and thought this might be an alternative to pred but clearly it is not.
There IS no alternative. Not in the UK at least. Rheumies are not magicians and that GP is extremely uninformed. In the USA some people are able to be treated with tocilizumab - but in the UK it isrestricted to 1 year for patients with relapsing or otherwise difficult to manage GCA.
Methotrexate does NOT replace pred, it MIGHT be used alongside pred to POSSIBLY allow the patient to get to a slightly lower pred dose but it very rarely replaces pred for PMR. It is a drug used to manage RA and which is thought to change the way that pred is metabolised and potentiate its inflammatory effect so that you get the same effect at a lower dose. It has its own adverse effects.
I tried it - and all it did was exaccerbate the adverse effects of pred, something that is listed under drug interactions between the two! It has been used by some patients and they have got to a lower dose. MrsNails has written posts about her experiences with it.
Another option is leflunomide - used in the same way but real life hasn't confirmed the promising results claimed in a study done about 20 years ago. I have a friend who used it - fantastic result initially, she says she felt it "kick in" and she felt really well and got off pred but a few months later developed peripheral neuropathy and tremor at the full dose. She stopped it - and immediately had a full-blown flare. She tried a lower dose and got some improvement with the pred - and then had another flare and had to return to 20mg pred. Previously she had been on methotrexate, got a few mg pred lower but never felt well. I suspect that had she been satisfied with pred she probably have taken less pred overall than she has trying out mtx and leflunomide.
Like jinasc, I'd be looking for a doctor who can understand that in the case of PMR you NEED to be on pred - it is the standard management for PMR and in the UK that will not change any time soon. And that PMR is, by definition, a long term disorder - like RA or lupus. Pred is the way to manage it at present and its adverse effects are little worse than the effects of many diseases managed with methotrexate - it doesn't cure either,
I have been on pred, much of the time at above 10mg, for 11 years. I do not have osteoporosis even without bisphisphonates, I have no signs of glaucoma or cataracts nor steroid-induced diabetes, I gained more weight with undiagnosed PMR than with pred although I did have problems for a time on methyl prednisolone - I was switched back to pred and went onto a low carb eating approach and lost 35lbs and went from Cushingoid to "no-one would know you were on pred" according to my rheumy team. Many of the adverse effects of pred can be managed when you know how - which is more than be said for the adverse effects of un- or inadequately treated PMR.
He obviously hasn't looked at any medical literature about PMR. It is a CHRONIC condition that on average lsts some 6 years - it is never managed by repeated short courses of pred, you start at a dose that is enough to get things under control and then taper slowly and steadily to find the lowest effective dose - it is a process called titration but done the opposite way to usual, it is done with a lot of drugs but you usually start low and work up to find the right dose for THIS patient. In PMR you start high and work down or you would forever be playing catch-up and exposing the patient to the effects of pred with no benefit to balance it out. That is the longer term low dose that your husband is looking for - but you have to catch the runaway horse before you can get a halter around its neck.
Even the 1 in 5 patients with a relatively short form of PMR take a year to get off pred and only half of patients are off pred by 6 years. 40% of patients with PMT require pred after 10 years, albeit a low dose. This is ALWAYS a chronic condition, it requires pred to manage the symptoms and the alternatives are unreliable.
Gosh--thank you for all that info. I think that from everything I have read on here that hubby's PMR is nowhere near as bad as some of the other contributors. It was dreadful at the onset but pred was simply a miracle and the effect was almost instantaneous. Within a few hours symptoms cleared but of course it wasnt completely clear and he continued on pred for 2 years but then a flare up 2 months ago.Thank you for taking the time and trouble to provide such a comprehensive response.
I seen my rheumatologist on Monday it was my first appointment. It seems that the only time my bloods were slightly raised was when I started having the pain and when I was down to 5mg on pred but in between that they have always been fine but I have always had some form of pain except when I was on 20mg My consultant is sending me for mri scan to rule out nothing else causing problem but if not has suggested I try methotrexate and pred together
Can I just ask how do u know you can reduce to a lower dose does your pain stop at the dose you are on and that's the time to reduce as this only happened when I was on 20mg sorry if this sounds stupid and would you recommend trying methotrexate
I had a bad experience with mtx so I'm not the person to ask, but I do still think it is worth a try as it does help some people. MrsNails is a good source of info about mtx and there are lots of threads about it on the forum. If you only had symptom relief at 20mg and not since it raises questions: the first is how did you taper? Quick tpers with large steps often cause problems - was it that? But otherwise, difficulty reducing in a sensible approach is a sign that MAYBE this isn't PMR as we talk about it but one of the other potential underlying causes of the symptoms.
My doctors have had different opinions as to whether I have got PMR or not because of my bloods being fine when I was still having pain. I started off on 20mg for 3 weeks which was great felt good then I dropped to 15mg pain came back went back to 17.5 and still had pain although different level. My GP said to drop gradually but no matter what dosage I have been on I have had some amount of pain I have never quite known when the right time to drop is only by reading this forum that I realised you were having regular blood tests I only had them done when i questioned i was still having pain whilst being on the steroid at any level below 20mg that's why I asked to reduce the steroid right down but when I got to 5mg it was too bad so I went back to 8mg and suffer what I'm having with that. The side effects at a higher dose were making me feel really unwell this is why consultant has suggested using methotrexate with the pred if the mri scan shows nothing else
We don't all have regular blood tests because some of us never had raised blood markers - or at least, not outside normal range. That doesn't mean that much, it happens in about 20% of patients. Symptoms always trump blood tests.
It IS worth a try because it MIGHT work for you. If it doesn't help, you can stop.
I'm one of the 20% of patients without raised blood markers. But my symptoms were off the charts. I'm just treading water at 40mgs. pred. Starting to taper soon. Thank you for making feel not so alone.
Forms of inflammatory arthritis affecting the neck such as ankylosing spondylitis can mimic GCA. There are a few other conditions which impair blood flow to the neck - such as subclavian steal syndrome. There are probably other forms of vasculitis but I'm not an expert.
This was extremely helpful. Very good information on testing levels CRP &ESR. I will continue my research and all of the contributors have been a Godsend. I don't even want to think about going back to where I was just 2 months ago. My GP is advising me now and hope a slow taper will help with my osteoporosis from my endocrinologist will have me in better shape. The additional calcium,K2 and D3 has already improved my nail growth, a marked improvement. If it weren't for the PMR symptoms I might not have received the help that I needed. I believe God interceded and helped me find all of you. Thank you.
The nails might be the pred - honestly! I and several others noticed the same, best nails we'd ever had, and for some of us, it couldn't/can't be calcium.
He's a great chap actually. Not many GP's would shout across to you in Aldi and tell you to leave the bakewell tarts alone and get stuck into the fruit and veg instead!! I didn't even know who he was--- he didnt look like a doctor!!!
Ah thank you for that DadCue. Glad to hear that you have a GP similar to our "Likely Lad". I feel sure that he does his best for hubby and when he rings up its always "Hi Phil" and, as you say, more like a social visit. I think he knows PMR is pretty horrible but if you can avoid pred its a good thing to do but he actually wanted hubby to go back on 15 mg a day but hub was reluctant so he put him on 7.5 ---but at the time of going to press he's OK. Good luck with everything
Hey--been there done that etc. Hubby sat in armchair watching telly with the remote control LITERALLY about 12 inches from his hand. He asked me to pass it to him!!!! I gave him a right mouthfull!!!! I did realise that it was just too much effort to stretch out for it but I do like to remind him of that now that he's pretty much OK . 😀😀😀
Hi,I was diagnosed with PMR August 2020, after eight full weeks of extreme pain and disability. (I am age 71). Unlike many, the pain in my wrists and hands were as bad as neck, shoulders, and hips, to the point where my wife had to turn me over in bed, and had to button my shirts, etc.
My RA started me on Prednisone @15mg/day, which alleviated most of the pain. Now, whenever I get finger pain and stiffness, with pins and needles, I know I have reduced my Pred too much.
I reduced to 12.5mg in 30 days and to 10.0mg in another 30 days. Then a monthly reduction by 1mg. By January I had reduced to 6mg. At that point, I realized I was losing eyesight in my right eye. I found out that I had developed Macular Degeneration, and the first question from the Ophthalmologist was if I was taking steroids. He suggested I quit Prednisone ASAP, and suggested I switch to Hydroxychloroquine (HCQ).
I went to my Rheumatologist who agreed that it might work. This was the protocol:
1. Reduce Prednisone from 6mg /day in 1mg steps every 5 days. (After reading comments on this board, I thought that was crazy, but was willing to give it a go).
2. Take Hydroxychloroquine (HCQ) 200mg / day for a week and increase to to 400mg /day after that. She explained that it would probably take two months for the HCQ to take full effect.
3. Take Folic Acid Tablet 1mg every day.
3. Take Methotrexate 10mg once (only) a week.
That was 13Jan21, almost two months now. I was able to reduce my Pred, but by 1mg every 7 days. I noticed each time I reduced by 1mg, the following morning there was a slight stiffness in my hands and shoulders, but only for that first day of change. So, now I am on 1mg per day, without pain or stiffness, but afraid to eliminate that last 1mg. (Have been on 1mg for two weeks now.)
On 18Feb21, my Rheumatologist did a complete bloodwork (9 tests) and called with the good news that they all came back normal. She will do another set of test on 25Mar21. I do not plan on eliminating that final 1mg Pred /day until the blood results come back normal again.
I have no idea if this is going to work out in the long term. Nor has anyone indicated how long I will have to stay on Hydroxychloroquine.
Of course, I am not absolutely sure that this is even going to work, long term. But, the idea that I might lose my eyesight is compelling me to try. And, so far, so good.
As an aside, getting a $2,000 shot directly into my eye every month is not exactly fun either. And I won’t know if that will work, long term, as well.
Good to hear of someone else getting some relief from PMR symptoms using hydroxychloroquine (HCQ). I had two rheumies disagree on my PMR diagnosis as in addition to typical symptoms (without massive CRP or ESR levels) I also have hypothyroidism, Raynauds and tested positive for anti nuclear antibodies. When considered together by my NHS rheumy this suggested an undifferentiated connective tissue disease (CTD) and HCQ is listed as a standard treatment. Before my change in diagnosis I wasn’t able to reduce from 20mg to below 15mg pred without recurring PMR pain and fatigue. But 4 months into taking HCQ and I am now down to 7mg pred. After starting to feel small niggles creeping at this level, I have also found great relief from naproxen (prescribed alongside a proton pump inhibitor). Like many on this forum, neither ibuprofen or codeine ever touched my pain, so this was a real surprise. I am not a rheumatologist, but I have a biomedical degree and from what I’ve read I can see no reason why chronic PMR is not considered on the spectrum of connective tissue diseases where HCQ is routinely used to reduce reliance on pred. Yes of course it also has potential side effects, but it is cheap and is considered much less toxic than pred or methotrexate. It has even been reported as being an effective treatment for PMR, but I guess this study has yet to be picked up by the rheumy community 🤷♀️
I would be very interested in more information about HCQ. My rheumatologist recommended it to me but with all the negative publicity in US(Trump) and it's listed side effects I am hesitant to try it. I have history of heart concerns in my family. I am seeing a new rheumatologist in about a month for my ongoing RA and PMR. Hope to have more knowledge at that time.
Please keep supplying all this useful information. I will stay tuned. Thank you.
It depends on what they think the diagnosis really is. If it is PMR there was only one very poor study which was not encouraging and it is not recommended in PMR as a result. The one that looks so good is published on a platform that has form for poor peer reviewing.
Thank you this is encouraging information. Having a hard time questioning Dr. opinion. Brought up as a good catholic girl who respects authority. What a mindset!!That is why this site has been so beneficial to me. Keep up the good work.
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Will I ever be off pred with GCA?
All good news!!
coping with the pred drop
