PMR and NSAIDS effectiveness

Bones, joints and muscles
1

Hello all,

My previous post I have outlined that fact that I have been suffering PMR type symptoms since July 2013 , but because I am slightly younger than 50 (by less than two years), my rheumatologist is very reluctant to diagnose PMR to and to avoid long-term prednisone treatment until all other potential causes are ruled out. I have since been referred ot a rheumatologist.

To manage pain and stiffness, I had been taking 800mg of ibuprofen at aprox. 1 or 2am every morning. I believe this helps. After my last visit my doctor told me to switch to Tylenol to avoid ibuprofen side effects. I decided to go without any pain relievers to test out what the effect would be.

I went tuesday to Friday wiothout any pain relievers. The result was that my pain and stiffness was off the charts compared to what it had been. My glutes were so painfull that walking was a struggle. On Sunday morning I decided to take 800mg of Ibuprofen - the improvement was dramatic, and I could function much better and was in far less pain. I must also mention that starting last Wednesday I began to take about 6-10ml of Turmeric drops and started eating fish oil capsules daily, also taking large amounts of vitamin D , and potassium supplements. Perhaps this has had some impact (I hope).

Anyway, I realize that I have not been diagnosed with PMR at this point, though I strongly believe that is what I am dealing with, and that NSAIDS are said to be ineffective in dealing with this. It seems to me that my taking them early in the morning does have beneficial impact on what ever I am going through.

Just my two cents on the NSAID effectiveness topic.

b

2

Me again. I need to also add that after dicussing with my GP, I have stopped taking my blood pressure medication which was angiotensin blocker and hydrochlorothorazide combo. I want to eliminate the possiblility of this causing me problems. I also took a blood test to get readings on crp sed rate, vit d levels, and potassium levels. I realize that a lot of variables have changed that may have an impact in addition to the use of NSAIDS.

Later this week I will likely discontinue ibuprofen again to see what severity symptoms are like.

b

3

I've been taking the PMR road for a long while now. Prior to diagnosis I was tried on every anti-inflammatory and painkiller my doctor could find but none of them had the slightest effect on my pain. When I was finally given Prednisolone I simply couldn't believe the difference in me from one day to the next. That small 'miracle' is now often used here as a diagnostic tool for atypical cases like mine.

If ibuprofen works for your pain then you go for it, but it can have as many side effects as steroids and overdosing is easy. Take care.

4

I have not said that NSAIDs are totally ineffective in PMR - what I said was that most of us involved in the forums have not found it to be any help. There are articles and guidelines that suggest NSAIDs for mild cases but it never did more for me than blunt the worst of the pain.

Ibuprofen is a fairly effective antiinflammatory and, taken at 2am, probably does achieve the highest level at about 4am, coinciding with the shedding of cytokines in the body. 800mg is the flooding dose for ibuprofen, the dose that should be taken for the maximum effect, but a dose that should not be taken as a regular thing. Just because ibuprofen can be purchased without a prescription does not mean it is innocuous - one lady on the other forum took 3 doses over a couple of days and was admitted to A&E as an emergency with a coffee-grounds gastric bleed.

I'm sorry you have come across a rheumy with fixed ideas about what "normal ranges" mean - there will always be the odd patient who doesn't fit with such concepts. The youngest patient in the literature with a diagnosis of PMR was 24 years old. There had been reports in the literature of about half a dozen patients under 50 prior to about 2002 - and there are papers warning of the risk of NOT considering PMR in patients under 50 and therefore missing the diagnosis. The concept you can have PMR at 50 and not at 49 is crazy! I am sure there are numbers of under-50s who have PMR but who are given other labels - or ignored as hysterics.

Have you had your vit D level checked? Very low levels can give rise to symptoms almost identical with PMR - so it is one of the exclusion criteria.

In the meantime - I hope you continue to improve as you have this week.

Eileen

5

On the subject of "normal" age range, even though I have had jaw pain on and off for some time now, not one but two eye consultants have told me on separate occasions that I couldn't have GCA because I am "too young". When I pointed out that I am 60 both said they rarely see GCA in people under 70. As a result I have not had the biopsy I wanted - just a check of the ophthalmic nerve to reassure me there is no damage and an assertion that the pred I am on for PMR (currently 13.5 mg) will protect against GCA. I would prefer proper investigation and prevention.

Sorry to go off topic but I thought it would be interesting to add to Eileen's information about rheumys' fixed ideas. It seems it isn't just them but some other specialists too. This is worrying.

Christine

6

Hi Eileen,

This post is not intended to be in response to any post or poster regarding effectiveness of NSAIDS. I have read the literature that states they have very little impact.

As noted in second post, I asked my doc for a vitamin d test - as I understnad this can be a cause of symptoms.

Believe me, I would prefer to take no pain meds at all, but last week was not good at all. I want to narrow down the impact taking ibuprofen has. Since prednisone is not an option right now, I need to do whatever I can to improve my pain and mobility in the absence of it. What I am really hoping is that the turmeric and vitamin D are what is causing the improvement in the last couple of days. If it turns out I believe the ibuprofen is helping, then I will likely only take it once or twice a week in order to minimize side effects. I will also test benefits of acetaminophen and naproxen to see if there are benefits and then perhaps rotate meds providing the side effects are separate (all in consultation with GP).

b

7

With respect to the age question. I am very tempted to ask my rheumatologist how under 50 can be included in within the age clasification if all doctors are so strict as to not diagnose anyone under 50. It is a self-reinforcing standard. Ridiculous.

8

"When I pointed out that I am 60 both said they rarely see GCA in people under 70"

I'm speechless! MrsO on here will be too! We know of quite a few in their 60s who have been diagnosed with GCA and at least 2 in the early and mid-50s.

Though it is possible that an EYE specialist HASN'T seen many under the age of 70 since the traditional specialist in the English-speaking world does seem to be a rheumatologist. In Germany the patient is as likely to see a neurologist or eye specialist as a rheumatologist - I imagine it depends on which symptom of GCA appears first or most dominantly.

And to say 13.5mg of pred will "protect" you from GCA is crackers! If it did they could dispense with using high dose pred (60mg is a typical starting dose in GCA).

Basically I think it is a misunderstanding of statistics on the part of the average doctor. It occurs to me that any who are not actively involved in research will NOT have a particularly good understanding of what a "normal range" is, By definition a normal range will cover 95% of the population:

"we use a range between two quantiles , usually the 2.5 centile and the 97.5 centile, which is called the normal range"

and, equally by definition, that leaves 5% who are not covered. 1 in 20 who won't fall into their assessment of "normal range". Normal range is NOT 100% of patients - ever.

We find the same problem with patients with "normal" blood tests. My ESR ranged from 4 to 8, however ill I was. The only time I've had an abnormal CRP was after a cardiac episode! By the next week it was back to a normal figure. But at the time the PMR was extremely active.

The previous guidelines issued by the British Association of Rheumatologists, available until a couple of years ago, stated "over 55" as the age criterion. Last year they were revised to "over 50" in the face of fairly incontrovertible evidence that patients were presenting with GCA who were under 55. Last summer in South Wales, a man of 37 who died suddenly - apparently of a stroke - was found at autopsy to have had undiagnosed GCA. Pathologists know it all - it's too late.

It is known that far too many GPs and specialists in private/office based practise do not do enough reading about latest work. Fair enough, a GP would be left with no time to see patients if they read about everything, but they also ignore latest guidelines when issued and sent to them - and recently a survey established that GPs in the UK did not even know there were guidelines for GCA and PMR diagnosis and treatment issued by experts. Rheumatology specialists DID know - but my experience is that a lot haven't read them or think they know better.

Eileen

9

Hi Christine

Eileen's right - of course I'm speechless too! I actually heard of a young lad in his teens diagnosed with Temporal Arteritis, aka GCA, a couple of years ago.

We had an ophthalmologist speaking at one of our PMRGCA support meetings and he admitted that in his role he tends to see those patients who have already lost vision to GCA rather than patients pre-diagnosis.

Certainly your ophthalmologists are wrong to advise that 13.5mg of Pred will "protect" you from GCA. Many patients on similar doses for PMR can still succumb to GCA.

A biopsy after a period of time on steroids will be of little use as the steroids can mask the enlarged cells they're looking for. In any case, a patient can still be suffering from GCA in spite of a negative biopsy because any enlarged cells may escape the tiny section removed. I know someone who had 3 biopsies, all negative, in spite of which she was eventually diagnosed with and treated for GCA.

MrsO

10

Hi Eileen and Mrs O.

I must say I was gobsmacked too! As I still haven't had an appointment with a rheumatologist, despite having seen my GP and tentatively diagnosed with PMR nearly 3 months ago and symptoms for at least a month before that, there will now be no way a rheumy could diagnose GCA. It's too late if the steroids mask the giant cells.

I suppose it would all rest on whether I get new and unusual headaches.

Christine