Just been referred to see a Rheumy

[JanboC]

Hi, I don't post much om here but read it avidly everyday. Diagnosed GCA April 2018, tapered down to 15mg pred but have had to increase to 17.5 as symptoms came back. Been to see my Opthamologist today, CRP is below 4, ESR up from 31 to 33, But apparently it is my platelets that are a problem. In the last 6 months they have gone from 385 to 414 to 455. So, he has referred me to a Rheumatologist to see about using a steroid sparing drug. Can any of you seasoned pro's enlighten me as to what this rise in platelets means please? I have read loads about the steroid sparing drugs etc and am open to trying it but I just don't see the connection. Does this mean that I have PMR, and have had it all along? Or am I just starting? Any help appreciated. TIA, Jan

[PMRpro Ambassador]

Increased platelets are a normal response to being on pred. Or probably pretty much any immunosuppressant drug.

pdsa.org/immunosuppressants...

I cannot believe what I hear some doctors coming out with at times...

Sorry - don't get what you are asking about PMR though? PMR and GCA are just different expessions of what are probably the same autoimmune disease. Some people with GCA have PMR as one of their symptoms, others don't. PMR will always respond to the higher doses of pred but once you get below about 15mg/day the PMR-type symptoms may appear.

[JanboC in reply to PMRpro]

Sorry, I just assumed that if you were referred to a rheumatologist it meant you could have PMR? I am confused by the relationship between the two illnesses. It appears to me that most people have both GCA and PMR,and not many with just GCA! So are you saying that I don't necessarily have PMR then?

[PMRpro Ambassador in reply to JanboC]

You have an autoimmune disorder that can cause PMR symptoms or it can cause GCA symptoms. Some people have one or the other in terms of label, some have both - it all depends which regions of the vascular system are affected. Figure 1 in this paper

academic.oup.com/rheumatolo...

shows which bits are affected to match the diagnosis label we are given. The green markings are for cranial (head) GCA, the red ones extracranial (not in the head) GCA and the green ones for typical PMR - and if you look closely you can see they overlap a bit. If you have the red version then the arms, legs and jaw may be affected - which was the case for me, a mix of symptoms.

In fact GCA patients are normally looked after by rheumatologists - probably originally because many GCA patients do present with PMR symptoms which tend to be rheumatic in appearance. Rheumatologists also look after a lot of other diseases that involve vasculitis so consider themselves experts in vasculitis too. It is quite unusual for GCA to be managed by opthlamologists though it may happen.

[JanboC in reply to PMRpro]

Many thanks, I understand a lot better now. I had assumed that because I hadn't been referred to a rheumatologist then I didn't have PMR. And I also wasn't aware that rheumatologists managed vasculitis! Thanks again, just have to wait and see how long it takes for the appointment comes through.

[Cyclegirl54 in reply to PMRpro]

That’s a very interesting if a bit technical read . I didn’t understand all the medical terminology on account of my discombobulated head- my new word- but probably would be equally bemused in full health!

[PMRpro Ambassador in reply to Cyclegirl54]

That's why I just referred to the pretty picture Unfortunately I have no idea how to just post that!

[JanboC in reply to PMRpro]

It certainly helped, thanks

[Telian in reply to Cyclegirl54]

It is - just look at the pictures! You can work it out....

Your 'new word' is one that OH uses occasionally.

[gifford7]

I'll take a stab at this. Platelets are measured when doing a COMPLETE BLOOD COUNT. Normal range is 150k/uL-400k/uL. Steroids can raise the level. Referring to

mayoclinic.org/diseases-con...

"Platelets are blood particles produced in the bone marrow that play an important role in the process of forming blood clots. Thrombocytosis (throm-boe-sie-TOE-sis) is a disorder in which your body produces too many platelets.

It's called reactive thrombocytosis or secondary thrombocytosis when the cause is an underlying condition, such as an infection.

Less commonly, when thrombocytosis has no apparent underlying condition as a cause, the disorder is called primary thrombocythemia or essential thrombocythemia. This is a blood and bone marrow disease.

Your doctor might detect thrombocytosis in a routine blood test result that shows a high platelet level. If your blood test indicates thrombocytosis, it's important to determine whether it's reactive thrombocytosis or essential thrombocythemia to know how to manage the condition...

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Essential thrombocythemia

People with this condition who have no signs or symptoms are unlikely to need treatment as long as the condition is stable. Your doctor might recommend that you take daily, low-dose aspirin to help thin your blood if you're at risk of blood clots. Don't take aspirin without checking with your doctor.

You might need to take drugs or have procedures to lower your platelet counts if you:

Have a history of blood clots and bleeding

Have risk factors for heart disease

Are older than 60

Have a platelet count greater than 1 million"

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Since your platelet count is only 455k, way less than 1 million, even though slightly over 400k, i don't see a problem continuing with pred therapy.

[Roltuba]

I’ve just taken a screenshot of that Fig 1, I’ll post it in a new post!

[Hidden]

Hmmm, can't help with this, but hope you find the answers... good luck at Rheumy and let us know how you make out!

[JanboC in reply to Hidden]

Thanks Melissa, I will x