Hello everyone, I've never posted anything before so hope I'm doing it right. I'm having a nightmare time at the moment. Diagnosed pmr in June, rheumatologist concerned about terrible headache, had temporal biopsy which was negative, but I had already been started on 40mg steroids and had that dose for 3 weeks, had awful side effects but pain gone & could walk again. After consultation to say biopsy negative she put me straight to 30mg for 1 week, then 20mg for week, then 15mg for week. Then 12.5 for month. Side effects plus the huge drop were dreadful but on ringing helpline at hospital was told to get checked at gp's. Was told it just side effects. Struggled on and started to cope better by having morning sleep after breakfast. Then came the next planned drop to 10mg for month. Total disaster. Felt so dreadfully ill and excruciating headaches again, plus pain in right leg below knee, can't put any weight on it. Rang helpline again, nurse checked with rheumatologist who put me straight back to 20mg, so I'm back to where I was two & half months ago, plus leg pain. Rheumatologist says pmr not knee, so anything else like that I see gp. Did that & she says the pmr is connected & giving me this awful leg pain as the muscle & everything inflamed. Cannot get her to see that surely at 20mg & pmr pain gone why is leg hurting? No answers except more painkillers & massage myself with almond oil, which is about as useful as putting a teaspoon of something in the ocean! I cannot get my next rheumatologist appt until end of November! I am getting more depressed by the day, now hobbling around with a walking stick & can't even get outside, I feel so trapped & in limbo between hospital & gp. I know I'm in the very early time of this awful disease, but surely the 'textbook' treatment/reduction plans they give you are not so cut & dried as that. Only wish it was as simple as they make out. I'm so sorry for rambling marathon post. Would appreciate any advice if anyone has got to the end of this rant!
Does anyone else have problems with pain in knee ... - PMRGCAuk
Does anyone else have problems with pain in knee with pmr?
So sorry you are going through all this. The experts will be along, but I just want to get something straight. You presented with GCA symptoms. But your biopsy was negative. So the doctors assumed you therefore did not have GCA? And now that you are suffering the same symptoms again there is still no acknowledgement that you may indeed have had GCA, or some form of vasculitis even if it didn't affect the piece of artery which was biopsied?
What happened to the usual protocol of, if it behaves like GCA and the symptoms respond to pred treatment it probably is GCA and should be treated as such, negative biopsy or no?
Your "taper" sounds absolutely awful. If the only reason was because of the assumption you didn't have GCA after all, and not because you had a serious reaction to the medication itself, or because there were truly clear reasons why the diagnosis could be wrong, then you have been made to reduce far too quickly.
Hello, thank you so much for your reply. Yes I did present with GCA symptoms with PMR, so rheumatologist put me straight on 40mg. Was on that for a week before biopsy done, then my scheduled rheum appt was 2 weeks later, so I was on 40 for 3 weeks. As biopsy was neg rheum put me immediately to 30 & so on as per my post. When I had the terrible headaches again at 10mg rheum put me back to 20mg 'to be on the safe side' as she put it. Headaches did ease couple days after going back to 20. My plan now is 20 for this week, 15 for 2 weeks, 12.5 for month, 10 for month, then reduce by 1mg per month. So exactly as before! Before I get to the 10 tho I think it will be november when my appt with rheum is scheduled. That is of course if it not cancelled. Apart from 1st diagnosis appt I have only seen her once. She wanted to see me in 3 months which would have been October, but there are no appts. We have had to push for November as by original appt was for next February!
I think you will just be repeating the scenario which has put you where you are today. The inflammation of GCA can be present, even after symptoms have resolved, for many months. You were only diagnosed a couple of months ago. If 20 is sufficient, then I hope you will be able to stay at that dose for a while before commencing a much slower taper. But there are other people on the forum who have earned the GCA t-shirt and I'm sure some of them will be along in the next day or so with their advice.
Where are you?
You need a better rheumatologist - one who knows that a negative biopsy DOES NOT mean this isn't GCA but that they didn't find what they were looking for, the large cells that give it its name. A positive biopsy is certainty - you have GCA, but the TAB is only positive in about 40% of cases and that doesn't mean that you don't have it. And you DEFINITELY need a better GP. Almond oil my foot!!!!!
As for your reductions in the face of symptoms - I'm speechless. They do at least appear to agree you have PMR - but those drops at that speed won't work. Hence my question - where are you?
Hello, thank you too for your reply, Im so glad I don't feel so quite alone in this awful thing. I'd never even heard of PMR or GCA before I went to gp in April! I am in Buckinghamshire , UK. My rheum specialises in PMR apparently?! According to her revised plan given to me over the phone by the nurse, I finish my week of 20mg tomorrow & then go to 15mg for the next 2 weeks, before 12.5 for month etc.
She specialises in PMR? I pity her patients! Wonder how many she manages? Or rather, doesn't manage...
Is a single private appointment in Chertsey an option? I do realise it isn't down the road necessarily and isn't cheap. You could be referred for a second opinion on the NHS but it would take longer and you would be transferred to NHS after a private consultation anyway if appropriate.
I couldn't do private sadly. There must be a shortage of rheumatologists here as appts. are few & far between. Reading all the info on this site tho has armed me with much more knowledge so I'll be ready with many questions for sure! Thank you so much for your replies, it is so much appreciated. I'm sure my husband, who is wonderful, gets a bit fed up with me talking about it.
I am sorry to hear that you are having these struggles. Alas they sound familiar.
I do not have GCA, but rather was diagnosed with PMR May 1/18 by my gp after 5.5 months of non-diagnosis. My symptoms came on overnight in Dec/17, and presented almost totally in my knees (they were heavy, tight, my quads ached, and behind my knee, ached as well). After x-rays and MRI of both knees, I was diagnosed with a number of existing chronic knee issues (completely torn ACL, every type of meniscal tear between them both and protrusion out back of knees, a large, fluid filled bakers cyst behind one, and osteoarthritis in both with my right knee already having complete cartilage deterioration).
Both my gp and rheumy have told me PMR does not affect the knees, but during my visit to the orthopedic surgeon last I asked him about it and he said that PMR can certainly impact the knees. I then discussed the difference in my knee pain throughout my journey thus far. First 5 months of heavy, tight, aching knees/legs, then prednisone which took ALL the pain away, and as I taper, more presenting organic pain in my knees from pre-existing conditions, which feels totally different (more pain at back of knees, pain down the shin of the leg in which the cartilage has all worn away - feels like bone on bone, and some pulling on inside and outside of knees. This all to say you can have PMR in your knees and other existing knee issues at the same time. I have a prescription from my gp for Tylenol 3 for knee pain as my pred tapering continues. Also will be getting a Medrol injection into the worst (right) knee end of Sept to address pain, surgeon says no plan of surgery yet (I am young, says he, at age 56) for knee replacement. Moving forward my focus is on weight and prednisone reduction (at my own pace).
I'm wondering if you've asked about an x-ray or MRI of your legs/knees? If they insist it isn't PMR related, it might provide some insight into what is causing the pain.
As far your taper from your rheumy, I would advise you to avoid a repeat outcome by tapering more slowly. My rheumy did the same thing, told me to taper from 20 to 15 to 12.5 and then 10. First taper from 20 down to 15 no problem, but even going down 2.5 mg from 15 to 12.5 caused a flare....right back up to 15 for 5 weeks. This time I cut my 5mg pills into quarters to allow me smaller amounts for reductions. Instead I went from 15 to 13.75 to 12.5 and I am now alternating 12.5/11.25 each day for a week or so. If that goes smooth I'll continue on with 11 (my gp has since prescribed 1mg tablets for me to taper more slowly, and told me not to even mention it to my rheumy). I plan to stay at 11 for at least 2 weeks before lowering down to 10 (with a transitional week in there of alternate does of 11/10). Thus far no problems. Below 10mg I plan to go even slower (as suggested on this site) and let my symptoms be my guide. This is just MY tapering plan, everyone is different. If my rheumy doesn't agree with my plan to taper no more than 10% each reduction, I will ask to see someone else. It is too stressful for us who have PMR/GCA to be arguing, debating or feel pressure from the specialist who is supposed to be assisting us. After all, stress is considered to be detrimental to those of us with PMR/GCA, and I refuse to let a "by the textbook" rheumy further my condition rather than try to heal from it.
Others have provided some more in depth info about GCA. Think about their suggestions and continue to gather information so that you can best advocate for yourself through this process. The folks in this forum are a wealth of information and very supportive.
Wishing all the best moving forward.
Leslie
Thank you so much for your reply. 3 a.m. here ,so usual insomnia! I feel sure that my knee problem is not connected to my pmr too. I cannot put any weight on it at all from getting up from sitting to then walking. I guess I am going to have to try yet another visit to gp to see if I can get better help. re my pmr, as so new to all of this I have followed to the letter the rheum's advice, but am now thinking that I need to almost manage my own pred reductions. Especially as it is so long between appts. But am worried rheum will be annoyed at that & then not see me at all? I am finding all the info on this site & the kind replies from others very helpful & informative. This is such a strange disease isn't it? Not helped by the length of treatment needed. My rheum said it was "18 months of treatment". She made it sound so easy & gave me 2 booklets to read, one on pmr & the other gca, both of which made it all sound so easy to deal with. Now I know the reality!!! (Both booklets went into the bin)! Much more help on this site.
had terrible knee pains several months ago but then it went off and for several weeks I felt quite normal,and coped with family visits and a very busy month in August. It was when the rheumatologist told me to reduce from 10mg to 9mg that pain came back and some days I can hardly walk down the stairs. I have upped my dose back to 10mg and am waiting to see if I feel any better. Yesterday I was in a lot of pain and stiffness until suddenly mid afternoon, it went and I was fine in the evening. This morning right knee bad again. Fun, isn't it!
My PMR started in the “pelvic girdle” area, then neck and shoulders, then hips, then knees over a few weeks (maybe longer). Repeated this progression 3 times while my doctor gave me short courses of low dose steroids (which wiped out my pain each time) before referring me to Rheumatologist.. I don’t have any history of knee pain otherwise. I have absolutely no doubt that my PMR causes knee pain.
I have knee pains with tapering. Pains go away after I get used to the new dose...about 2-3 weeks.
I think you need to stick with Dr. PMRpro and all the experts on this site. Your Dr. is horrible and needs to be fired! Hope you feel better.
Thank you everyone for taking the time to answer, it is so much appreciated. I am getting so much more help from here. I too cannot see the point of exactly the same taper plan as I had before. I was trying to give each drop time so I could hopefully adjust & found having a morning sleep after taking pred at breakfast helped & I felt in some sort of control of it all, but at 10mg it was terrible & now it is all in control of me yet again & now this knee problem is making it all even harder. I'm getting to the point where I don't see the point of struggling to get to gp just to be told take painkillers. Our doctors here seem obsessed with physio, so you get to wait four months for appt to go to diagnostic centre, then totally useless exercises for 6 weeks that you can't do because the pain the too great, then they pass you back to gp to be referred somewhere else. I'm losing faith in all of them I'm afraid. Getting very depressed with it all. Best wishes to all out their suffering with this awful pmr .
Hi
I've had PMR for 3years 3 months. Started at 15mg Pred now down to 3 mg, not without 2 returns to 15mg.
My highest Pred dose masked severe deterioration of my hips without me feeling the pain, but each time I got to 8mg my GP wrongly diagnosed flares and returned the Pred to 15mg and the pain went away.
In December 2017, at 8mg again, I asked for further investigation as the pain was not bilateral. In Feb 2018 I was diagnosed with severe osteoarthritis in both hips. I had the first hip replaced in May after getting Pred down to 5mg, at the surgeon's request. I have continued to reduce Pred, now at 3mg, with no change in my mild PMR symptoms. Now using a wheelchair as I wait for 2nd hip op.
In the beginning I reduced from 15 for 6 weeks to 12 for 4 weeks to 10 for 6 months. First time I reduced by 1mg after that, but later I reduced by 1/2mg using the DSNS method.
I think for your knee pain you should ask GP to investigate for other conditions.
Best of luck, Valerie
I had a similar experience. GP kept saying it was PMR as the pain got worse and worse. In the end I went to see an orthopaedic surgeon privately who said you need a new hip now or you will be in a wheelchair in six months. I was gobsmacked. My surgeon wanted me on zero pred, in the end we negotiated on 5mg!
It is so interesting to read other people's experiences. My knee seems slightly better today & I feel little more positive. All the posts I read say that the huge drops I am told to do are stupid. I've been on 20mg for this past week & been told to go to 15 tomorrow & as my husband said, that is a large percentage drop! Just as I get to feel a little better, the dose changes drastically & off I go again on a downward spiral. When I mentioned to rheum when I was on 40mg why a huge drop from 3 weeks at 40, then straight to 30 for 1 week, then 20 another week then 15 for further week, till reaching 12.5 & to stay at 12.5 for month, she said as gca biopsy was clear, the starting dose for "just" pmr is 15, so we get to that now. Never mind then that I suffered horrendous side effects, from the pred itself plus the withdrawal side effects of such a huge change in dose. My body ( and my mind) was in turmoil with my body that was already struggling! I rang helpline but again was told pmr diagnosis is started at 15. I was only given 40 as she suspected gca. The fact that I actually took those higher doses seemed to have no bearing on anything, basically I was being told I just had to ride it out. I've now decided I'm going to reduce more slowly. Going to stay on 20 for another week till I feel stronger then might try 17.5. It's not as if the hospital is in a rush to see me, can't see anyone till right at end of November, so I'm going to go with all the invaluable info I found from all of you on here. Thank you all. Sorry for yet another rambling post. I honestly have never gone on about myself as I do now! I'm 65 & used to walk miles every day with my dog, swam & had a part time job. So I do feel trapped now. Best wishes to you all.
The starting dose for PMR is "the lowest effective dose in the range 12.5-25mg". She needs to get up-to-date. But the starting dose for PMR is immaterial - if she started you high, then you have to reduce slowly for comfort. Recommendation 3:
rheumatology.org/Portals/0/...
I hope one day SHE has to try it. And receive no sympathy.
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