Confused

[Kitty49]

I had my first consultation with Rheumatologist last Thursday

She was very nice but as I was armoured with questions that have been pertinent for me but also explored by fellow suffers on this site

I take medication to boost my immune system if unwell with viral or other infections. I was informed to take any supplements I liked as long as I was aware of warnings on the manufactured substances .

I was also told that this is not an auto immune condition but just inflammation and causes not know

I was discharged as she felt this was one of those conditions that could be treated by any GP

I had a blood test and to be reapeatrd in a month wit a recommendation of the standard reduction off prednisone as mostly cited in this forum

So my question is is PMR auto immune condition or am I just foggy brained

Being on this site is so helpful......I read all the posts and at some level are pertinent for me too

I have booked into the Birmingham research conference afternoon on the 9 th March and it would be very supportive to meet with this group

Thanks again and appreciate further clarification on PMR

[Hidden]

Hi Kitty

I used to take echinacea in the Winter or pre flying but 'knew' (not sure where I'd picked the info up from) that I shouldn't take it once diagnosed with PMR so I haven't.

Someone will be along to explain fully in a while I'm sure.

I'm also booked into the Birmingham Conference, so can touch base before.

Mrs N 💅🏼

[Kitty49 in reply to Hidden]

Thanks Mrs Nails

Yes I understood not to take Echinacea if immune suppressed but with PMR is the immune system overactive ? or does this also mean suppressed / same as

Would be grateful for more information

I am also looking into natural alternatives to reduce inflammation such as turmeric and the Hemp component MBD ....would be grateful for any more info or other alternatives to prednisolone

I will buy Kate's book as well

Many thanks

[polkadotcom]

I don't think you are foggy brained at all. This is the first time I have heard any Rheumy say that PMR is not an auto-immune condition, just inflammation - does she have any views on what is causing the inflammation in the first place?

About the supplements - given that PMR is an auto-immune condition, (that is your immune system has gone into overdrive and is attacking it's host, you) it has always seemed to me that to take supplements to boost it under any circumstances is a no-no. Why try to boost your immune system when you are taking steroids to suppress it? It must cancel out somewhere along the line. Either the steroids must work harder to suppress the extras you are sending to the immune system, or the steroids give up the fight and you ultimately have to take more to keep going?

Taking the prescribed supplements, Calcium and Vit D (and in my case magnesium and occasionally potassium) is to fill a void, as it is known that the Pred leach these out of your system. These are replacing, not supplementing.

A case in point. I took methotrexate for two years and it is well-known that MTX is hard on the liver. Milk thistle does a very good job of aiding the liver and my first thought was that I could take it to help out. Not so. I was told even before I could buy my first packet that I must not do so as they need to see the true values when testing and any kind of supplement would only muddy the waters.

I've got brain fog now.

Would you be able to see a different Rheumy?

[Kitty49 in reply to polkadotcom]

Thanks P ....yes this was my exact ?to the hospital Dr .....but she said def that it is not an auto immune condition and not a known causal factor for the inflammation...I was so surprised....I think I may have been asking too many ??? And she just minimilized the condition

Maybe I could write into hospital and ask for further clarification

Thanks again p

[PMRpro Ambassador]

It is generally held by the real experts that it is an autoimmune disorder - the same as GCA. I never cease to be astounded by the ignorance of some doctors about PMR and GCA - unlike polkadotcom I have come across this before.

On vasculitisfoundation.org/ed... it says:

"Polymyalgia rheumatica (PMR) is an autoimmune disease that causes an inflammatory reaction affecting the lining of joints, especially the shoulders and hips, and sometimes the arteries and some major branches of the aorta. It’s the second-most common rheumatic disease after rheumatoid arthritis, and is the most common inflammatory disease in the elderly."

And although it is a bit heavy going, in 1997 ard.bmj.com/content/56/10/5...

said

"The concept that PMR cannot be an autoimmune disease because of the lack of autoantibodies has been challenged by the finding of anti-lamin B2 antibodies specific for the C terminus in PMR patients.8 Other findings that suggest involvement of the immune system are the decrease of circulating CD8+ lymphocytes,9 which return to normal values with remission, the increased concentration of soluble CD8,10 soluble interleukin 2 (IL2) receptors11 and intercellular adhesion molecule 1,12 and the pattern of cells infiltrating the synovial membrane. These are mainly CD4+ lymphocytes and macrophages with intense expression of HLAII class antigens.2 This pattern, which is very close to that seen in GCA,13 is highly suggestive of efficient antigen presentation and of consequent antigen driven immune inflammation."

so she can put that in her pipe or wherever she likes.

I wouldn't waste my time on her again.

And there are several of the supplements that tell you not to take them along with pred - because the pred is SUPPRESSING the immune system's activity. What would happen when you have PMR and are not on pred I'm not sure.

[piglette in reply to PMRpro]

I suppose thinking PMR is not an auto immune disease may not cause too much problem provided the doctor follows the steroid rules. What is really worrying is what other things do they think that really could be life threatening to people. You come across occurrences in the press daily nowadays.

[HeronNS]

ard.bmj.com/content/56/10/5...

"Immunology

The concept that PMR cannot be an autoimmune disease because of the lack of autoantibodies has been challenged by the finding of anti-lamin B2 antibodies specific for the C terminus in PMR patients.8 Other findings that suggest involvement of the immune system are the decrease of circulating CD8+ lymphocytes,9 which return to normal values with remission, the increased concentration of soluble CD8,10 soluble interleukin 2 (IL2) receptors11 and intercellular adhesion molecule 1,12 and the pattern of cells infiltrating the synovial membrane. These are mainly CD4+ lymphocytes and macrophages with intense expression of HLAII class antigens.2 This pattern, which is very close to that seen in GCA,13 is highly suggestive of efficient antigen presentation and of consequent antigen driven immune inflammation."

[Kitty49]

Thanks PmPro, Piglette and Heron for your considered in depth analysis of the process of PMR

I would not want to live without taking prednisolone ....going back to that level of pain is inhuman

Many thanks again

[SheffieldJane]

The damage these doctors do is incalculable. I hope you can turn this very negative experience to something positive. Your so called Rheumatologist was being cruel behind the screen of her title.

I really feel for you. You're not alone though you've got us and a GP to train and perhaps ask for a referral to a consultant who understands the condition. Good Luck - we see you. X

[piglette in reply to SheffieldJane]

I do despair about some of these doctors' knowledge of both PMR and steroids. My ESR increased in November to 60 and CRP to 11 so my GP told me to reduce the pred! This month ESR has increased to 70 and CRP to 18 and she said go up half a mg. I am worried that my inflammation markers are so high, but she did not seem to worry.

[Kitty49]

One no longer feels alone wit all this support on this forum

Thanks Sheffield Jane

[sooWOO]

Reading this post makes me realise how lucky I have been with the rheumatologists and doctors I see. I hope you can see someone with more knowledge and understanding of PMR. Good luck!