Too good to be true?

[suzieh]

Diagnosed with possible PMR just before Xmas after suffering terrible arm/shoulder pains and feeling quite unwell and tired out for 6 mths. I have an underactive thyroid so thought the lack of energy /unwell feelings were due to that but blood tests proved otherwise. Dr inially just prescribed Naproxen thinking it was "arthritis" but this didn't relieve me of pain - just made me feel sick. More blood tests revealed ESR level 19 (not high?) but a different Dr suggested trying Steroids as she thought it could be PMR ..............

After 24hrs on 20mg of Prednisolone NO PAIN and I felt great!! After day 5 I felt a bit jittery so decided to take only 15mg a day and I am fine on this - feel great in fact...no pain and loads of energy. I don't think I have felt so well for years. I wonder if my levels of natural steroids have been inadequate for ages? Have had more blood tests this week due to see Dr next Wed.............. Any q's I ought to ask? The side effects of Steroids look scary ......?

[hannmorr]

Hi Suzieh

The response to steroids sounds like typical PMR although your ESR is not up near the 40 plus which is also typical of PMR. Confusing., but There are a number of PMR sufferers who don't get the high ESR...you might be one of them. My ESR was 45 and 15 mg prednisolone was plenty for me and I soon got down to 10 with no trouble. Getting down to 2 mg has taken one year! Many authorities say that under 7.5 mg side effects are not such a worry. Ask your doctor about this and how to taper slowly slowly to a lower dose. If you don't go slowly, specially under 10 it is possible for the illness to flare up and the pain come back. Balancing the dose and the pain is the secret. I have some pain but manageable. Hope this helps.

Not a doctor but have done a lot of research into PMR.

Cath

[hannmorr]

Suzieh

Few thoughts to add to my earlier answer...ask doctor to test your vitamin D levels as these are often too low and also ask about GCA symptoms. GCA is sometimes associated with PMR ...comes on after original pMR diagnosis and you need to get to a ophthalmology dept of a major hospital pretty quickly...you can lose sight very quickly and permanently. High dose prednisolone is the treatment of GCA.

Google this yourself if doctor is no help. I don't stress about GCA but I am aware of the possibility so I am on the alert for signs of it. Cath

[suzieh in reply to hannmorr]

Thank you for your advice - I really appreciate it. I will ask the Dr about my Vit D (and calcium levels too). Dr is helpful as she initially told me to look up PMR on the internet to try and see if the symptoms sounded like mine as this could help her with my diagnosis ... I read about GCA at the same time. I have no symptoms of that but am now aware of them.

Going to Cuba on Jan 20th for a couple of weeks so hope I continue to feel well - I expect the Dr will give me some advice about travelling

[Celtic PMRGCAuk volunteer]

Hi Suzieh

Whereas both the ESR and CRP blood tests are often used as a diagnostic tool for PMR along with a patient's symptoms, a number of sufferers never have raised markers in their blood, so well done to that "different Dr" for suggesting a trial of steroids! In the absence of a specific diagnosic test, Drs often use a rapid response to steroids as confirmation of their diagnosis.

As to whether you may have had insufficient natural steroid in your body which has resulted in PMR, in the absence of a known cause we can only speculate as to what triggers this illness (flu, statins, stress, trauma, genetics and the environment are among suspects). However, there is a test available to check whether our adrenal glands are up to speed and producing a normal amount of cortisol (natural steroid) and I believe this entails spending several hours in hospital having repeat blood tests.

Yes, the side effects of steroids do "look scary" but rest assured that no-one gets them all and some lucky people don't get any. It is because of the risk of these side effects that Drs try to get us to the lowest dose possible that controls our inflammation. However, it is important not to be in a rush to reduce, and definitely not in large steps, because it is all too easy to miss the point at which the dose is insufficient to control the inflammation, resulting in flares and sometimes a return to the starting dose which can only result in a higher overall intake of steroids.

I do wish you well and a continuing pain-free journey to recovery.

[suzieh in reply to Celtic]

Thank you very much for your advice - it is worrying to first be diagnosed with something that no one you know has experienced before.

I do think stress may have caused me to develop this ......I am retired now, but left a stressful full time teaching job 3 years ago because I was feeling so tired and exhausted a lot of the time. I love being retired and really have no worries now, but have had bouts of feeling very tired on and off - even though I can now do as I like ...... (always blaming menopause or thyroid problems).

Last summer I was under quite a lot of stress through family reasons, when I was able to relax again the first bouts of pain occured - PMR ???

The steroids are still making me feel great - long may it last!! Loads of energy and no pains at all.

[Hidden]

Hi Suzieh,

With this illness, don't feel that you are unusual in that your ESR markers are low. Mine have always been normal, but 2 rheumies have said that I am a classis case for PMR. I am into my 3rd year with this illness - getting much better now and feeling no pain, only stiffness at times. My energy levels are well up.

I came off steroids far too fast in the beginning, due to my GP's advice that it was only a wrench injury. Then, after being diagnosed with PMR by a specialist, I had to go back up to the original dose of 30mg. It has been over a year for me to get down to 9mg pred for the 2nd time, but I feel I really am on the home stretch now.

Prednisolone - side effects? They look real scarey, don't they? My advice is, follow a sensible diet. No added salt or sugar, no refined carbs, lean meat and lots of fish, veges and fruit. I also eat lots of herbs that are anti-inflammatories and herbs that lower blood pressure. It sounds so boring, but infact you will feel much healthier on a low sugar - salt diet, and it will help keep the weight off.

Look after your skin. Pred can make it much more fragile - massage with lots of moisturiser every day. If pred puts weight on you despite you best efforts, remember that it will go once you are down to the lower doses.

If you feel pain returning then go back to the dose that kept you pain free and stay there for a little longer. NEVER drop if you are still in pain.

I am not an expert in how our glands work, but this is my 'take' on auto-immune diseases and PMR is almost certainly one of them. As we age, all our endocrine glands become less efficient. When we are young they mostly work very well and our adrenals can produce massive amounts of adrenalin ------ remember? I do! I don't even remember feeling tired when I was a youngster. I could push my body to the limits without any damage. Adrenalin is our natural steroid and if we have a shortage then prednisolone is the nearest chemical we have to replace it.

As we get older physical and or mental stress can take a huge toll because our adrenals often cannot cope. If we are carrying, in our genes, certain illnesses, then this is the time that they might flare.

Try not to worry. Take things one day at a time.

Pats.

[suzieh in reply to Hidden]

Thank you so much for your kind words and advice - I feel reassured at this point...not so worried. Still feeling very well indeed with no pain.

I agree Healthy eating is important .....I already follow the same healthy eating regime as you do - occasional chocolate as a treat!! I like herbs too - which do you think are good for anti inflammatory purposes?

I think my blood pressure is ok at present. Someone has suggested i get my Vit D tested - good advice I think. Have you had a bone scan re steroids..... i had one done for something else when I was about 45 ( I am now 59) bones then were in a good state.... I may ask the Dr on wed what she thinks about that as well as her advice on reducing steroids gradually.

[ritter in reply to suzieh]

Hi suzieh,i am ritter a new one to the fold,pats always gives good advice she sounds a lovely lady,I am 69 this year and was diagnosed with Temporal Arteritis last jan,of whitch time has been a living nightmare,total shock and surprise on my part,its a good idea to get your vit D tested and your calcium too.as the steroids do play havoc with your bones.and keep to a good healthy diet with plenty of calcium and vid D in it.this site is brilliant,thank you all the people that contribute to it.

[Hidden in reply to suzieh]

Hi suzieh,

sorry I have taken so long to reply, but here's my list of herbs etc that I use regularly to help combat the PMR.

Basmati rice - brown is the best

basil

black pepper

cayenne pepper

chives

chilli pepper

cinnamon

curry powder

extra virgin olive oil

garlic

ginger

nutmeg

parsley

rosemary

thyme

turmeric

Dark chocolate

fish, especially oily, and all sea food

vegetables and some fruit (fruit contains sugar, so I limit it)

And yes, I did have a bone scan pre steroids and the results were very good, but 2 years on who knows what they are like now. I am planning to ask for another scan soon.

Pats.

[suzieh in reply to Hidden]

Thank you very much for this list and your info. - all very reassuring.

I am still feeling great with no pain at all and loads of energy. I feel better than I have for years - I can't believe I can wake up feeling well and have no trouble getting out of bed. Now on 12.5mg pred. per day but am staying on this for a few weeks while on hol. before trying to reduce further. Haven't had an increase in appetite and haven't put on weight yet - if anything my renewed energy has meant I am doing more and have actually lost a little weight - I am quite pleased about that!

My Dr says my vit D/calcium/bones need an eye kept on them; I shall ask her for some tests in the next few months.

[Whittlesey in reply to Hidden]

Thanks Pats. This is pretty much the diet I try to follow. It is the one that the neurologist I saw before I was diagnosed (who helped me get a blood test for c reactive protein) recommended. I saw him after I was diagnosed and he recommended it for dealing with this serious disease. I find it hardest, the no bread, or milk. Milk is ok, can go without that, but bread -- can be difficult. I am trying. The rest is in my diet. Thank you so much for posting this. I am glad you are feeling better. best, Whittlesey U.S.