Post PMR - free at last, even though still on 4mg of pred.

[pats555]

Well no, actually! Certain joints - shoulders, knees and hips playing up like billio. This started when I finally got off 5mg down to 4.5mg. Now on 4mg. I have a sneaking suspicion pred has taken 'pay - back'.

Pats555

[DorsetLady PMRGCAuk volunteer]

Hi pats555,

Difficult to know at this level of Pred whether it's your body adjusting to the lower dose, or the dreaded PMR!

My GP always says to me, if a perfectly fit person was put on a dose of Pred for even a short period, when they came off it , they would feel the normal aches and pains of life. So anyone reducing (hopefully to zero) should feel some aches, and not be unduly worried by it. However, I think you need to go gently just to ensure things are under control.

I'm at present doing to slow reduction from 4.5mg to 4mg. Touch wood, at present no troubles, but I am taking it ultra carefully. I do have a creaky left knee, but I know that's OA, so I'm not concerned by that particularly, although do wish I didn't have it! Good luck with your reduction, but don't rush (however much you want to!)

[pats555 in reply to DorsetLady]

Hi DorsetLady,

Many thanks for your reply. I spent 4 years wrestling with PMR and then it had gone. Once I got below 10mg my knee and elbow joints played up like mad, but gradually the pain would subside. I guess it was somewhere between 7.5mg and 5mg that the illness went back to sleep. It must have taken me at least 18 months to get from 10 to five and then I spent at least 6 months on 5mg. Getting below 5mg has been a nightmare - my body seems very reluctant to let go.

My knees play up, but now my elbows are fine, and now I have pains and stiffness in my lower back and also my shoulders. All these pains go after I take 2 ibuprofen.

I've tried to explain to my GP how hard it is, but he doesn't seem to understand.

Pats.

[DorsetLady PMRGCAuk volunteer in reply to pats555]

Hi Pats,

Unfortunately, your last sentence says it all! Some doctors just can't seem to "get it" if your body doesn't do what they expect it to.

As you, and others have said, it would appear that your adrenals have given up the ghost, but as also said difficult to prove if not tested. I do feel for you and your situation, and really don't know what to suggest. Life can be a b**** sometimes can't she?

Unfortunately with the state of the NHS I think we're all going to struggle to get tests done in future. But it's our fault - we shouldn't all be living longer! On that note, I'll wish you well, but be careful with the ibruprofen, not too much with the Pred. Some say none at all, but my pharmacist reckons it's ok, so long as used sparingly (applies to gel as well).

[Celtic PMRGCAuk volunteer]

Pats, it sounds very much as though you aren't on a high enough dose to maintain control of your inflammation. If you were ok on 5mg but not at 4.5, then it would have been better not to have continued reducing to 4mg. Are you someone who had raised ESR and CRP markers at diagnosis? If so, then perhaps a repeat of those tests will confirm whether or not there is any inflammation resurfacing. Have you perhaps had any stressful events lately or have you been overdoing things that might have contributed to a flare.

If it was me, I would go back to 5mg for a week or so - if that makes a difference you will have your answer. Good luck.

[pats555 in reply to Celtic]

Hi Celtic,

You could be right about pred dose versus pain, but this is not PMR. I had it too long not to recognise the symptoms.

Not one blood test showed any marked rise in inflammation when I was first ill, yet I could hardly move when I got out of bed with agonising shoulder pain and stiffness that took hours to improve. 30mg of pred knocked the pain out in 3 hours. My specialist said I was classic PMR.

My GP just nags and nags me to get off pred. I don't know why?

I've just had my yearly blood and urine tests done - cholesterol up a bit, but nothing else to worry about.

Yes, I suppose I get stressed out - but it's the general worries of a mother. Nothing major.

Could it be the side effects of long term pred on soft tissue. My skin is more fragile, but doesn't bruise as badly as it did on the higher doses. Perhaps my tendons and ligaments are weaker - could that cause pain?

I do push myself too much on good days. Then suffer for the next two days.

Pats.

[Celtic PMRGCAuk volunteer in reply to pats555]

Pats, it took a long time AFTER coming off steroids for my knees to feel anything like normal and for my ankles to completely lose their stiffness. I became convinced that there was a fair amount of steroid-weakened muscle/joint pain going on.

PMR pain doesn't usually respond to Ibuprofen so, as you say all your pains are going after taking Ibuprofen, then perhaps the steroids are having an effect on your muscles or you have something else going on, for instance Fibromyalgia, or late onset rheumatoid arthritis.

Have you had your shoulder pain investigated for any rotator cuff injury? Long-term steroids can certainly be responsible for that as they can soften and weaken the tendons and ligaments around the joints (possible with other joints as well), but physio can help.

Many medics advise against the use of both steroids and NSAIDs, such as Ibuprofen, together because of the risk to the stomach. I certainly wouldn't consider the two together as I have a damaged sole kidney, possibly due to Ibuprofen taken in my non-diagnosed days with PMR/GCA, or possibly even due to the long-term uncontrolled inflammation itself.

Importantly, do try not to push yourself on those good days - it just isn't worth the payback.

[pats555 in reply to Celtic]

Thanks Celtic,

I know it's not fibro - my eldest daughter has it so I know how it presents and I have no pains what so ever in hands and feet. It can't be RA as I have full movement of my joints and no swellings anywhere.

I'm just hoping, that with time, my body will heal itself.

So sorry to hear about your loss of a kidney. I dread my tests each year, mainly for kidneys, but they have never changed since first tested in 2005.

Yes you are right - shouldn't push the exercise, but it's so hard not to when you feel that old familiar surge of energy.

Pats

[jinasc]

Ask you GP to arrange an ACTH Test

The ACTH test (also called the cosyntropin, tetracosactide, or Synacthen test) is a medical test usually ordered and interpreted by endocrinologists to assess the functioning of the adrenal glands stress response by measuring the adrenal response to adrenocorticotropic hormone (ACTH; corticotropin) or another ...

Now your below 5mg it can tell you if your adrenals are waking up and at what state they are currently at.

Take a book to read.

[pats555 in reply to jinasc]

Hi sambucca,

Yes, I would love to have this test, but my dear doctor has never suggested it. Wonder why? Could it be the cost?

If things don't improve soon, then perhaps I will mention it. Oh, how I would love to talk to an endocrinologist. After all, in my humble opinion, it was my overworked adrenals that failed to cope and allowed my PMR to escape.

Pats

[jinasc in reply to pats555]

No Pats, there are as many reasons for PMR&GCA as there are grains of sands on your local beach.

We will get there in the end as more research is now being done than there was 8 years ago. EULAR and ARC are now working their socks off. It is on the increase and when big pharma realise there is money to be made, stand by and watch research take off even more.

I won't see it, but I sincerely hope future generations don't see it, or if they do there is a cure.

[pats555 in reply to jinasc]

Hi sambucca,

Well you are probably right, but I know this illness is common - not unusual as was once thought. We certainly could do with new drugs to treat it. Potentially, the cure causes more long term damage than the illness.

How crazy is that?

Pats

[jinasc in reply to pats555]

I have no complaints about pred, it stood between me and blindness. The beauty of pred is that it has been around so long that every side effect is known.

Newer drugs side effects are still being listed, that is why we have a Yellow Card Scheme.

[pats555 in reply to jinasc]

Hi sambucca,

When it comes to GCA pred really does the job - it saves sight, as long as it is given at the correct dose. I am so pleased for you. I too do not resent pred or fear it, but many people cannot cope with the ruinous side effects it can cause. I think I am lucky - I am cured and pray PMR will not return.

Looking back to your previous analisis of the miriad causes of PMRGCA I must conclude that you think the causes of the illnesses are a complete mistery.

My father had PMR and I have had it. I nursed an elderly lady with PMR and her eldest son also developed it. I think we that get these illnesses carry an inherited defect in our genes. So many auto-immune diseases are passed on this way. When I was first ill an elderly GP who said he had seen many patients with PMR said that if I was to get a rheumatic illness I had probably got the best. Why? I asked in amazement - ' because you will probably beat it and recover'. his words kept me going through all my darkest times.

Pats

[Hidden in reply to pats555]

Thank you Pats. Your GP's words are very encouraging

[PMRandRA]

That's sad news. I would quickly take matters into my own hands, nip up to 5mg again and wait until every last twinge or tingle has gone, totally, for about a month (all the time still on 5mg) and once you are absolutely certain that the dragon is stilled, then reduce again by a half. Take your time and get there quicker,

Good luck whatever you decide to do.

[pats555 in reply to PMRandRA]

Hi PMRandRA,

Guess by your user name you've got another nasty to cope with. Thankyou so much for your concern.

I think I'll hold this dose for a while longer before I up the dose - it might be O.K. Then, if I'm still in pain, up to 5mg again and see my GP and demand tests.

Pats.

[PMRandRA in reply to pats555]

Yup, you are right, I have 3 types of arthritis plus PMR/GCA. I think your Doc is right, it is beatable and I believe that we will all recover ultimately. Good luck to you. xxx

[pats555 in reply to PMRandRA]

PMRandRA

Thanks for your reply. Just to confirm that I think I have weak tendons and ligaments - pred damage. Apart from time and gentle exercises there's nothing much else that might improve things, I think. My poor overworked GP has little interest except getting me off pred. PMR has shuffled off, so get on with it.

Ibuprofen helps tremendously so I take it. Some doctors say it's fine to take it and others disagree. I have no damage from ibuprofen - we are all different in the way our bodies react to drugs.

I hope you are managing reasonably well - having two rheumatic illnesses must be very hard at times.

Pats.