GCA treatment

[simoncla]

I was diagnosed with GCA in Sep 2015. I was on 60 mgs of pred for 6 weeks til my blood pressure sky rocketed, then it was dropped to 35 and told to keep reducing whatever. I was told never to go back up even if I got symptoms back. When the scalp tenderness returned and I got Jaw and Tongue pain when eating I was told its not the GCA and to keep reducing. I did for 6 weeks til I'd lost 9kg then went back up off my own back to clear symptoms. Also told my upper arm and thigh pain definitely cant be PMR. No alternative offered.

When I mentioned what I'd read on here I was told not to believe what I read on the internet. When I asked GP if I could see someone else he said there is no-one else I am seeing the best there is. When rheumy wrote to GP about change in meds it took 3 months for electronic letter to arrive.

I still get eye and temple pain and pain in back of head and other symptoms but have got down to 8mgs of pred. Rheumys reviewed my case in January without seeing me. Others seem to be seen a lot more often and have regular blood tests. I suppose it depends what health area you live in. Sorry to go on but I just wanted to get it off my chest.

[DorsetLady PMRGCAuk volunteer]

Hi simoncia,

Words fail me!!!

What a way to be treated, your Rheumy needs a rocket - and reporting as a complete and utter disgrace to his profession. GP doesn't sound as if he's worth his salt either.

Of course there are other Rheumies you can see, even if it means privately, but that shouldn't be necessary. If you let us know where you live, I'm sure there are people on here who could recommend somebody who has more knowledge of GCA and PMR than your current one - although that wouldn't be difficult - he seems to have no idea.

And where you live should make any difference -although unfortunately it seems to - it is a National health service.

Hopefully you can get to see another Rheumy and get the correct advice.

But when you feel better do think about making a complaint about your treatment, it may not necessarily help you, but it may stop others being treated in such a shameless way in future.

Good luck.

[simoncla in reply to DorsetLady]

Thank you DorsetLady and others that have replied. A lot of the trouble is that I have seen 3 different rheumys in 3 visits and the GPs surgery has about 10 GPs and it is very difficult to see the same one again without long waits. Despite the bad treatment from the "experts" I feel I am improving, with the help of this website and a support group I have joined. I just felt so frustrated with professional help I needed to let off steam

[piglette]

I cannot believe how bad your rheumy and GP are.

I normally organise my own blood tests and just book. No one has said anything yet. The blood nurse and I decide on any extra tests apart from ESR and CRP, I am becoming a bit of a nerd on blood tests! If my liver test is normal, I have a drink to celebrate.

[Freddie01]

Hi Simoncia, really sorry to read your statement with regard to how you have been treated. I totally agree with DorsetLady you should see another GP and request a referral to see a different consultant. The symptoms you have mentions are the same as what I have. I started on 60mg last October now on 5mg I still have days where I get headaches, tongue pain, blurred vision, tiredness, cramps but I cope knowing I have consultant who is willing to take calls and offer reassurance. Good Luck

[simoncla in reply to Freddie01]

Hi Freddie01. Tks for the reply. You've done well getting down to 5mg that quick. I did get down to 5 a few weeks ago but started feeling worse so went up to 7 this week and today I feel quite good for a change. I get blurred vision in one eye bur it only lasts around 30 seconds or so, and I get a pain in the eye and at point in the back of the head none of which I had when originally diagnosed. I will get appt with GP again and try for new rheumy. Hope you keep improving.

[Freddie01 in reply to simoncla]

Hi again I went down to 5mg last week, and like you have started to feel worse than normal. I have suffered with blurred vision on and off since last October it was only a few weeks ago that my GP suggested I go to the optition to have my eyes checked. She in turn rang the hospital when I was there and was given an appointment to see someone at the eye clinic. After eye scans, drops, and further tests I was reassured my eyes were fine and I should ask for an MRI scan so will ask my rheumy consultant next week. Positive thinking 😀😀

[simoncla in reply to Freddie01]

Hi Early on I had eye tests at opticians and the eye hospital both of which were fine. It doesn't stop me worrying every time I get a pain or pressure feeling or blurry sight in my eye. Still ignoring the "professionals" and managing my meds. myself is making me feel better some times. I do have to put drops in my eye regularly because of irritation however.

[PMRpro Ambassador]

I'm not surprised. But never mind me being on the internet - you have been told a load of rubbish I'm afraid. If that's the best - I'll take a trial of some of the others!

[PMRandRA]

Strewth! Upper arm and thigh pain are highly indicative of PMR! Those people should be chucked out of the medical profession, just as my previous doctor was when she wrote in my notes "hypochondriac" ! (I was crying from upper arm and thigh pain!)

I wonder if she would apologise if I had walked in with a white stick!

If you are able to, change doctors. Go to a different practice because doctors tend to collude in the same practice and look after each other's backs!

I wish you well to find the right person to help you. xxxxx

[PMRpro Ambassador in reply to PMRandRA]

Upper arm and thigh pain are taken as VERY suggestive of GCA.

You DID complain about that GP I trust?

[Suzanne457 in reply to PMRpro]

Hello PMR pro....I am still very much in the learning phase concerning PMR/GCA. So I was not aware that upper arm pain and thigh pain were symptoms of GCA as well as PMR (which I have been diagnosed with). So could you please expand on that info for me? Thank you...

Suzanne

[PMRpro Ambassador in reply to Suzanne457]

Will have to have a look for more but Johns Hopkins says: "The most common symptoms of GCA are headache, pain in the shoulders and hips (called polymyalgia rheumatica), pain in the jaw after chewing (called jaw claudication), fever, and blurred vision. Other symptoms can include tenderness of scalp (it hurts to comb the hair), cough, throat pain, tongue pain, weight loss, depression, stroke, or pain in the arms during exercise. Some patients have many of these symptoms; others have only a few. Blindness — the most feared complication — can develop if the disease is not treated in a timely fashion."

It is a sign of involvement of the brachial artery. Thigh claudication is mentioned somewhere.

[Suzanne457 in reply to PMRpro]

PMRpro....thank you for the info on GCA pain symptoms. I will go on to the John Hopkins site and do some research, always a worthwhile thing to do.

Suzanne

[simoncla in reply to PMRandRA]

It is virtually impossible to get into a GP practice in my area so I feel I have to stick with the one I'm at. I will, however get appt. with one of the docs I haven't seen before and try again to get different rheumy.

I agree about doctors. They have been wrong 90 per cent of the time with my diagnoses over the years. They are over paid and under worked despite what they try to claim.

[Jackoh]

As others have said - " words fail me!" Can't believe the appalling treatment and "care" that you have received. Glad that you say you are feeling better but again like others I would seriously consider changing your GP practice and being referred to another Consultant Rheumy. That has been the experience of some on here that they have had to change Rheumy- some several times. What area do you live in?

[simoncla in reply to Jackoh]

I can't change practice but I will try to see one of the gps I haven't seen before to see if I can get more sense. There are about ten gps at the practice of variable knowledge. See if there really are any better rheumies in my area.

[Wbednell]

I have GCA I had it for 12 years so I know what you are feeling all ,I can say is change your doc fast and bring your down very slow I usually drop 1mil a month but whenever​ I get off my ear jumps back so my doc let's me book my blood Tests good luck

[simoncla in reply to Wbednell]

12 years. That's frightening. 20 months is bad enough. Hope I'm one of the lucky ones and it clears in several years.