Brush off from Rheumy......

[Caro12line]

Following my post "Brush off from GP" my day just got worse!! I turned up for my Rheumy appointment this morning and was told it has been cancelled and I should have got a letter. (I didn't or I wouldn't have gone there!). I asked if someone could see me anyway as I have concerns and was told no, we don't do a drop in clinic. I burst into tears! (Part Pred part anger I think) A nurse came out to speak to me. I explained about the GP yesterday and she just repeated ......this is not a drop in centre (I was still clutching onto my appointment letter for today) if you have concerns go to A&E. I said and what are they going to do? Do they understand GCA? Do you go to A&E to discuss test results? She asked why I was so upset... Again I told her about the GP yesterday and said I am worried because I think they did the wrong type of ECR, my WBC count is high and my CRP has gone up and I need to know what is going on. She said WBC is an infection, nothing to do with Rheumatology. I was stunned! I said well maybe it's something to do with GCA, I have GCA in my Aorta and maybe that's where the infection is? She just looked blank (I don't think she knows what GCA is) and just keep saying, there is nothing we can do. If you are worried go to A&E. I am so so angry and upset. I feel aabandoned with a bag full of drugs and left to flounder.

[DorsetLady PMRGCAuk volunteer]

Hi Caro12line,

See my answer to your previous post!

[PMRpro Ambassador]

If you are on pred your WBC will be raised - it is a side-effect of pred. Both she and your GP should have known THAT!

Raised cholesterol is also a side effect of pred - same applies and it is nothing to panic about at this stage. Reducing carb intake is a better way of dietary control of cholesterol than a low fat diet (which I assume is what you have been told to use?).

She looked blank at the "aorta ECG" because there isn't such a thing. What you will need at some point is an echocardiogram where they use ultrasound to examine the heart and aorta. But that is unlikely to be needed yet - they did some form of imaging to diagnose the aortic GCA and would have seen if there is any widening of the aorta which is how an aneurysm starts. It is not until it is pretty dilated that there is anything to be done and so they just monitor it at first.

If your BP is normal that is probably because of the medication - no you shouldn't reduce it unless the readings go very low and you have problems. Many BP medications are titrated - you start at a low dose and increase it until you get the desired result.

The rash is much more likely to be fungal (thrush) than bacterial, antibiotics only work on bacterial infections and your GP should have known THAT too. I had a rash like that with PMR/GCA - it was an allergy to wheat which is probably associated with the autoimmune part of the illness! The only cream that helped me was trimovate, why I have no idea) - maybe your GP would prescribe it (as long as you don't overstay your 10min welcome). Wash it with water, dry it well and try to keep it dry, difficult when it is warm I know

The GP is wrong about 5 years - but there is little point requesting a dexascan in under 2 years, it is very likely to be turned down, my repeat was although it would have been 2 years (the usual spacing for at risk patients) by the time it was done. The changes do not happen quickly enough even when you are on pred to see the changes - it is the nature of the scan, it isn't a quantitative test.

Um - have I covered it all? Sorry I didn't manage to give you this with your first post but I am on holiday!

[Caro12line in reply to PMRpro]

Thank you so much PMRpro. I got in to see another GP (same practice) yesterday and she said almost exactly the same as you. Except she gave me Eumovate Cream, which is a steroid cream to use for a week. She also said following up with new blood test in two weeks just to check on the WBC 18 and CRP 14. I feel so much better now that someone is caring and keeping a check on me.

[Mini24680]

Hi!

I know how you feel, seriously. I'm glad you perhaps have been given an answer and your GCA is under control. Mine's not so much. It's a long story but basically I was sent to the Rheumy too a couple months ago and they told me nothing, I really wanted a scan to my lower back (I know this has nothing to do with it but bear with me) and basically they said it's a trapped nerve and we cannot give you a scan unless we absolutely feel the need for you to see a surgeon. Well there I am, missing a couple of important periods of Higher classes for this response and to not worry etc. Well then, it's not with them that have the blooming pain I had to bear, leaving me bound to a wheelchair sometimes that the pain goes down my right leg (sciatica nerve pain) and it's just so revolting that as well as that it was a waste of my time! I lost partly my vision on my right eye and have a clearly seen swollen right temple, headache, vision loss (like a shade in front of my eye), that I never recovered from; tenderness on the temple, honestly the symptoms really are there and it's clearly visible the swollen and inflammation but still because the ESR only came as 8, which is a bit low for my age (and as I am aware it can fluctuate and as you mentioned they might of not done the right one!) so, it's just so hard because I have this pain and seizures etc you name I don't have a clue why so many problems with my body, some doctor said it was due to an autoimmune disease, but YET AGAIN!! never investigated, and you know the story goes on an on forever, I feel abandoned, left alone with no one to count with, since no one is believing me what's going on, well I would really want to understand it too! At this point I'm just like whatever it is, I just need to know what it is to at least be at peace of mind and get treatment for it and I'm good to go, but yet again doctors are well...what they are. And I feel sorry to be saying this but the NHS staff is cool and everything, it's just the way the function and approach things is not the best most of the times, well this is from my experience anyway, but back to GCA: I actually got Prednisolone for an asthma attack a couple of years ago and still to this day, that medicine never gave me so much relief, the swelling on my right temple went away, the headache, tenderness, jaw pain, everything went away and I never felt so good on my life. I felt as I had it back, but I did know it wouldn't last forever, because as soon as the Pred. box I had finished (for short term use, and given they are really small and you take around 5 to 7 of them at once) the symptoms slowly came back. But given that fact I know it is GCA, last time compared to this time my ESR results were higher (now 8 than last time which came back as 0), the prednisone helped and I have the symptoms of it. I tried to search so much about what is wrong with me, I would go private but I can't afford it. I just need support and an answer. I would like at least a biopsy or angiogram done to check for GCA, to prove I am not lying. I know my body better than anyone else and from my perspective given other people's stories they were shrugged off and sent home and later came back now to A & E in their death beds because the doctor thought it was just all in their heads, without doing further tests. It just bothers me. I came across you question since my doctor prescribed me Eumovate cream too to apply to the area, I don't do it all the time, it seems to help a bit, but I know while I don't get further tests or someone who will cautiously listen to me and perform tests for it I won't have peace. I don't mean to scare you or anyone, but It genuinely just pisses me off because I never came across (apart from my GP being okay but not doing much to help) someone from the NHS that was nice enough to listen to me and tell them what is wrong and I seriously think that they should think again and help people out while they are alive for goodness sake! Not wait until is too late! I'm just not happy with this at all. And still haven't got my vision 100% back from that sudden continuous relapse (well when it got worse). Sorry I would say a ton more but I feel as if I said enough and glad you found an answer, and got prednisolone and the cream and it helped, because they continue to refuse to give me pred, but anyway, hope you're doing well and wishing you all the best and good luck in you full road of recovery, if not yet achieved. I just hope I find an answer soon

Take care.

With love,

Camila F.

[Caro12line in reply to Mini24680]

Hi Camilla,  thank you so much for your good wishes and thoughts.   Good news is 9 months on from that original post, I'm doing good.  I have learnt so much about GCA from my own research and the help on this forum.  And I have learnt not to be brushed off by doctors and Rhuemy...  I insist they run tests etc if I feel something is not right.   I am now in "drug remission" my GCA is under control with no flares and currently doing very well on 6mg Pred and tapering at my own pace (very very slowly, as I don't want a flare) now on the lower dose of Pred all my side effects are minimal and disappearing.   I feel like I have my life back

I do hope you can find the answers you need very soon.  Just keep pushing, until you get what you need. X X X