Waiting for the blood test

Hi Tills,

You must think we're real bullies going on and on about your Doctors! Just one point regarding suspected PMR and steroids. My Consultant, my Doctor and my best friend (also a GP) have all said that one of their methods of diagnosing PMR is a short course of Prednisolone. Its often difficult to diagnose PMR on blood tests alone and your reaction to steroids is a very accurate pointer. My bloods were almost normal, slightly raised CRP normal ESR but I had all the symptoms of PMR. I was prescribed Prednisolone (15mgs a day) by my Consultant and the relief was almost instant. My reaction to the steroids coupled with further blood tests that were now starteding to show raised levels of CRP confirmed her diagnoses. Hope this helps. Good luck and keep us posted on your progress.

Lizzie Ellen

Hello Tills

My experience is very similar to Lizzie Ellens with my first bout of PMR my CRP was slightly raised but ESR normal My Dr repeated the blood tests but the same came back I then had to be referred to a Rheumatologist ( I did this privately because of a 3 mth waitng list ) My Dr was convinced I had PMR which was confirmed by the Consultant and my response to steroids was instant and I sailed through it in 2 years People have mentioned on here enormously high ESR and CRP levels but I have never been very high at all I have forgotten what the normal levels are exactly but I have to be in low single figures to be normal ( or as normal as I can be !!) With my second bout of PMR I do have much higher raised levels of ESR and CRP I did wonder why you had to have a fasting blood test I thought that was to do with cholestral ??

You do have to give your new Dr a chance I agree but she also needs to know you cant function on a normal basis My advise would be to see what she says and if everything is inconclusive get a private appointment to see a Rheumatologist ( best money I ever spent ) !! I had all my blood tests he wanted (17 of them !!!!) on the NHS and he phoned and then confirmed in writing to my Dr I could start steroids In the age of computers everything should be instant The only delay to the blood tests which is acceptable is the snow and possibly lack of staff getting to work

Good Luck and try and get in to see your DR I have a good rapport with my Dr I hadnt seen her in the 3 years of being PMR free and she remembered straight away it was my CRP that was elevated the first time !! Im seeing her today as I have had to really up my steroids and need to know where I am going It just shows what a difficult disease it is to diagnose and treat as I have had 2 very different types already !!

Best wishes dont give up !! Mrs G

Hi Tills

I can only re-iterate what both Mrs G and Lizzie Ellen have told you and what they have said about raised ESR and CRP levels and the putting on to steroids to confirm when low levels, its all contained in the BSR Guidelines issued June 2009. They can be downloaded from either the NHS site, the BSR site or the PMR-GCA UK North East Region Support Groups site.

It may be useful if you downloaded them and took them to your young Gp and then sort of say, in a nice way, that you have found these and you know how busy they are blah blah blah and they might want to take a look at them.

Most of the GPs whom other sufferers have taken them to - have taken them and thanked the person for bringing the papers.

Good Luck

PS Some of us are meeting up informally in London in March - want to know more - email me on this site.

Hi, I just want to thank you for these post they were very helpful for me. I have a friend that has similar problems, and I was searching some info for him.

I'll try to follow up this thread.

Last night I got very low and decided that enough was enough!!! You were all pointing me in the same direction so I decided to stop being too patient. If I didn't see my doctor today, the next appointment would be Monday! I wasn't prepared to wait that long.

So, I made an appointment with my doctor and have just returned. I decided that if my blood tests were not available, I would complain - loudly!

However they had arrived. Cholesterol normal, thyroid medication OK and ESR/CRP levels - NORMAL.

I couldn't believe it and, to be fair, neither could she.

I told her about this site and said I had learned that many people with PMR do not have raised levels and the blood test is only one indicator.

She mused for a moment and then said that she was going to do something she had never done before . . .

She said she wanted to put me on 20mg of Prednisolone for two weeks as an experiment. I agreed as I believe it will decide things one way or another.

When I logged on and read all your advice, it was so good to know that I am on the right lines.

I am aching so much at the moment that I took 10mg as soon as I got home. Not sure if this is the right thing - should I have taken the 20mg or waited until tomorrow morning?

I am so grateful to you all for your advice and support. I will let you know how I get on.

Glad our nagging has helped !!! Steroids are normally taken in the morning as that is when we are supposed to produce it The other thing is a large number of us end up with not a lot of sleep at first on 20mg so the earlier you take it in the day the better I had so much energy if they had no side effects I would stay on them for ever !! Did she mention a Rheumatologist as I think this is the norm if you are not \"textbook \" ?? Dont forget to keep your own record of blood tests Also the normal range is quite wide I think ( I must look up the norms ) I have to be at the real bottom of the scale to feel normal I saw my Dr today my blood tests were taken in Hosp Monday and she had them yest and was going to ring me until she saw I was in today ( normal service for me !!) Unfortunately the results werent good but as the last few days I have felt better she has said to see how I go staying on 10 for a week but if I am aching up to 15mg My blood test booked for a months time and a further appointment with her then As i am back to where I was a year ago she also said would I now like to see a Rheumatologist again but I am going to see how I am next month as she treated me very well for it when I had it previously and I know a lot of people have blips As normal excellent service as usual but this is what you should have as well and I think you did the right thing going in person Hope all goes well and you improve quickley If you stay on them she should give you Calcium and and Alendronic Acid or something similar ( once a week drug for your bones )and frequent blood tests BP and diabetes You might have to remind her if she is inexperienced !! Good Luck

Pleased to hear that you've been to the Doctor's. I had exactly the same result from my first two or three lots of blood tests. My Consultant did what your Doctor has done and prescribed Prednisolone for the symptoms rather than the blood test results. I started on 15mgs and have always taken them straight after breakfast, all in one go. Suits me, it may well suit you. I enjoyed relief very quickly, thenI had a few achy days and since then its been a steady improvement. I back everything Mrs G has said about regular blood tests, Calcium and and Alendronic Acid, BP tests etc. I always take a list into the Doctors with me so I don't forget anything. You become very motivated when you've been wearing your concrete overcoat!! Let's hope that your course of steroids will prove one way or the other if you have PMR. Very best of luck and hope you will soon feel much better.

Lizzie Ellen

Tilly - You must be feeling so relieved to have had some action today and let's hope you will feel the benefits tomorrow with a much less painful day but don't get concerned if it takes a little bit longer. As Mrs G has said, it is recommended that the whole dose is taken early with or immediately after breakfast. One other thing is that if you continue on the steroids after the next couple of weeks, then you need to ask your GP or Pharmacist for a Steroid Card to keep with you. The only way is up now Tilly, so very best wishes (and, if nothing else, you've put paid to all our nagging!)

Tilly

Last with my sixpennorth - good.

A short course of steroids is ok as no long-term stuff kicks in.

But you will feel highs and lows, this is normal. Do not overdo it when you are on a high.

Good Luck - but I sincerely hope its not pmr and then you can be referred for other tests. If it is pmr - lets hope it takes a quick look at you and decides it would be better off elswhere. If not - we are here.

If offered Alendronic Acid or Fosamax, read the side effects and ask for other drugs, as there is nearly an alternative. Check all new drugs out with your chemist for compatibility. And, most important, learn to listen to your body and go with the flow. Fighting it just does not work.

And an appointment with a Rheumatologist please. As you are not a classic case.

:idea:

Mrs G - at least it sounds as though you have an experienced and helpful GP and I'm glad to hear that you are now feeling relief from increasing back up to 10. When I went back up to 10, I stayed there for 2 weeks and then reduced to 7.5 for 2 weeks, and then 7.5/5 alternate days for 2 weeks by which time the blood tests had returned to normal. Hopefully, you will also be able to achieve this in 6 weeks. I was told that the normal range for ESR is 1-20; for CRP 0-10 (by the rheumatologist) and 0-5 by the rheumatology nurse! I think some experts allow for age in the figures. You mentioned diabetes checks to Tilly and I've been thinking that I've never had a glucose test so will ask for one at my rheumatology appointment next month.

Best wishes to you and everyone - at least we didn't get the threatened snow here today!

Thanks Mrs O It has been very disappointing to see the last year of improvement wiped out My Doctor is looking at a slow reduction again I think As my bloods are 24 and 27 with 10mg I may well have to go higher but I really do feel quite a bit better still quite tired but definately less achy I think because I had it before and every time I reduced my steroids I was producing bloods of 2-3 /3-4 I was expecting the same this time !! I have to rethink the whole thing now definately a marathon and not a sprint this time !! Ive got a month to see how I go and Im not sure if a Rheumatologist would be any more help than my own Dr as she is very thorough and very easy to chat to I just wish everyone got the same care as I do My Optician also checks me for Glaucauma every year ( anothe steroid side effect ) as my Mother had it I do feel sorry for people who have side effects with all the tablets ( fingers croosed I havent so far ) Its bad enough having the concrete overcoat !! Hope Tills has some relief in rthe next day or two Im dsperate for some better weather as I want to walk more Have just let my health club membership go after 10 years which was very disappointing but the Aerobics classes were resulting in pulled muscles and its a bit of an expensive luxury just to swim !! I will look into Pilates and Yoga want something which will get my muscles going again but not do me damage ! Used to keeping fit with having ridden horses for so long Becoming a bit of a couch potato at present !! Best wishes to all Mrs G

Hi Mrs G,

just a thought, you say you would like something in the way of exercise to help you with your muscles that will not do damage.

My Rheumatologist and his team recommended hydrotherapy for me after my diagnosis. I am very fortunate in the fact that our local hospital is an Orthopaedic and has a wonderful pool.

There are other patients that attend and have travelled some distance, so it could be worth an ask.

Unfortunately I am 'under the weather' at the moment, and have not been to hydrotherapy since before Christmas and I am really missing it. I am sure it was helping a lot.

Hope you find something that suits you and that everyone is as well as can be expected !

Best to all, DD

Mrs G - an idea for simple exercise which I have found excellent is Chi Gong, a form of Tai Chi. We do some simple exercise to music, stretching, breathing, meditation and 10 minutes of Tai Chi (a workout for the brain it seems as I can never remember what to do! :? ). The class is held at my local Day Centre and has members ranging in age from mid-40's to mid 80's. I definitely feel energised and loosened up afterwards. I can't seem to do without that, together with my daily walk, as since the 10 days of hibernation due to the snow I have stiffened up and am hoping it is just the inactivity that has caused it rather than my latest tapering in dose, otherwise I fear an increase may be looming for me as well. I guess I'll know for sure next week by my symptoms when I've been on 2mgs for the whole week. I haven't been actually diagnosed with Glaucoma, just high eye pressure for which I have to use drops, and cataracts which I didn't had pre-steroids, so I am hoping I am near to the PMR and the GCA getting fed up with me and doing a disappearing act.

Hope you continue to feel better on 10mgs and it is possible that those blood tests will return to normal at this dose especially if the symptoms are easing. Best wishes.

Hi DD and so sorry to hear you are \"under the weather\" at the moment. Do hope you are able to get back to hyrotherapy soon as that sounds as though it would be wonderful for PMR sufferers, especially as I suspect the water is warm as well. Best wishes. MrsO

Thank you for your good wishes I havent really felt like looking for freash exercise at present but I shall certainly consider those two ideas We have a very local ex cottage Hospital which seems to do all sorts of therrapies and gentle exercise so I shall go and investigate them and also our local Community Centre has had a Lottery Grant and is just about to reopen after expansion so Im hoping that there will be something there I can I do fancy Pilates ( as long as it doesent involve coordination !!) My old Health Club was 10 miles away and traffic is horrendous here in the summer so something local will be nice Fingers crossed I dont have to go over 10mg Its interesting to know how many other people have been affected by the cold weather Im sorry to hear you arent doing too well DD and hope we have an early spring so we can all get a bit more walking going Best wishes to all