Help please: Hi Everyone Sorry I haven't been... - PMRGCAuk

PMRGCAuk
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Help please

Dee29
Dee29

Hi Everyone

Sorry I haven't been around for a while but things have been pretty bad here and I just seem to be one mass of pain and so so tired it's been impossible for me to do much beyond what I have to do on a daily basis. I hope that you are all as well as can be expected and have been enjoying the fantastic weather the UK is having.

I have a question for you all.

As some of you might remember I was recently diagnosed with FMR and a strong possibility of GCA too. I was put on 20mg of Pred and whilst it has stopped the headaches and tender scalp it doesn't seem to be helping the aches, swellings and pains much at all. I did ask a GP if she would up my dosage but she refused saying that she could not interfere with what my Rheumy had prescribed, this isn't my usual GP but one I saw on an "emergency" appointment because I was getting very very breathless and it was scaring me. She thought I might have a chest infection because she could hear noises when she examined me, a course of anti-biotics was prescribed along with an inhaler (which made me feel worse so I stopped using it). The anti-biotic course is now finished, it did help a bit ( I coughed up loads of phlegm) but I still have the cough and am still getting breathless, sometimes just when I am sitting doing nothing.

What I would like to know is if I am experiencing the norm for FMR sufferers? Should I still be getting the aches, swellings, fatigue and pains even though I am taking 20mg of Pred a day? To top it all off I forgot to order Pred with my meds this week and have now ran out, I only had 10mg left so took those this morning but I will be without any Pred until Monday at the earliest. My Pharmacy is closed on a Saturday so I can't even get any from them in advance of a prescription.....will this set me back do you think??

Thank you in advance, I know that some of you will be able to tell me what I need to know...even if I don't want to hear it!

Dee

9 Replies
oldestnewest

I forgot to say that the GP wanted me to have a chest x-ray as soon as anti-biotics were finished and I have been and had it done, she also wants me to do a Spirometry test which is booked for another 2wks time.

Caro12line
Caro12line
in reply to Dee29

Hi. I agree with PMRpro who (as always) has given great advice. I would add that you need an emergency appointment with your Rheumatologist, phone Monday and insist. I had the same problems with Rheumy and GP. My GP was very reluctant to interfere with the “expert” Rheumy and the Rheumy had no interest in managing me and side effects from Pred.

It is so important to be treated holistically and I found the Rheumatology Nurse (when I finally got to see her) was superb.

But first port of call, see your Rheumy and get the right dose of Pred to control the inflammation. And never “run out” of Pred. Always have a small back up stash.

Good luck

Dee29
Dee29
in reply to Caro12line

Hi Caro12line

I totally agree with you, PMRpro always gives great advice and it is very much appreciated as I start this PMR journey.

I have called the Rheumy appointment Dept and left a message for them to call me to make an appointment asap, I need to get the right treatment and at the moment I think that whilst the treatment I am getting is helping it is not quite right at the moment.

I honestly don't know why I didn't order my Pred with the rest of my medications, it's not something I do because all of them are pretty important for my physical and mental welfare....I must of been having a brain fog at the time.

PMRpro
PMRproAmbassador

First of all, it is extremely risky to simply "run out" of pred, especially when you are on a relatively high dose like 20mg. You need to find the duty pharmacy and show them your pred packaging to get emergency supplies. If you are in the UK you could call 111 and explain your problem with running out - they will probably also be able to help though they will still probably send you to the duty pharmacy. It will allow your inflammation to get out of control and the symptoms will get worse again - but the body becomes dependent on the dose of pred quite quickly at higher doses and you could become ill.

None of what you describe is "the norm" for PMR. Most people would respond fairly well to 20mg, especially after several weeks. The fact that GCA is suspected and your symptoms are quite bad makes me suspect that you need a higher dose of pred to get them under control - although it is strange that the PMR-type symptoms have persisted while the GCA-type ones are improved.

Do you have a rheumatology nurse contact? Not that they are available at the weekend of course. In the meantime I would call 111 and explain your situation.

But as for your GP and rheumy - I'm really not sure what to suggest. Other than find another GP who will take you more seriously about the PMR/GCA symptoms and discuss it as an emergency with a rheumatologist.

Dee29
Dee29
in reply to PMRpro

Hi PMRpro

Unfortunately I didn't get back online after I wrote the OP so couldn't follow your good advice. I ended up without any Pred until about 20 minutes ago when my partner went to my chemist and they have let me have some to tide me over whilst they are ordered.

I can now say that the Pred IS helping with the PMR symptoms, whilst always in pain, this weekend has been just one mass of pain, fatigue, etc!! I've learnt a valuable lesson and will make sure I never run out of Pred again!! The swelling of my legs and ankles in particular still happens when I'm taking the Pred and if I so much as catch myself slightly on my arms it comes up in dark red blotches, if the handle on my walking stick twists around my wrist, which it always seem to, I come up in a red blotch) I guess this is the blood vessels bursting??

The GP who refused to up the dosage is not my regular GP but one I saw on an emergency appointment because I was so breathless, I'm going to make an appointment to see my own GP as soon as they can fit me in with him.

Hello Dee l am sorry that you are going through a really bad time ,l agree with PMR pro,it is not good to run out of Pred as it is important to lower the dose slowly and it could cause a flare if the dose is stopped abruptly.l have sometimes almost run out of Pred myself,it is easily done ,especially on a high dose because they are used up very quickly.l hope that you will be able to get some urgently. I also think that you need a higher dose ,especially if it is possible that you have GCA.l do hope that you will be given help very quickly from your GP, the very hot weather is not good when you have breathing problems,l have had to use my inhaler twice a day this last couple of weeks,l had not used it much for the last year until now .lt does seem that you did have a chest infection,and the shortness of breath sounds like asthma,in which case you will need the inhaler,you probably need a different one if the one you have is making you feel worse. Please let us know how you get on ,and l hope that you will feel much better soon xx

Dee29
Dee29
in reply to Grants148

Hi Grants148

As I have already said in my reply to PMRpro, I didn't get any Pred over the weekend but my chemist let me have some this morning and I took my dose as soon as my partner got back here with it. I'm pretty certain that I have GCA as well because by Saturday afternoon I started getting the headaches associated with it again albeit mildly but by yesterday morning I thought my head was going to burst at times!

Talking about GCA....does anyone know or experience blurred vision with their GCA?? Mine is not severe, it's more blurring around the edges of letters/words etc but I cannot find anything online that says about blurring.

I think you are right about the weather not helping with the breathlessness, I find it worse when out and about. I do hope that I do not have Asthma, I don't want to be greedy and have all these things wrong with me at the same time :-)

I have just remembered something I meant to ask when first writing this post....I've the memory of a sieve at times!

Is itchy skin anything to do with PMR/GCA? I regularly get itchy spots nearly always on my lower arms but the itch doesn't last long.

Taking PMRpro's advice, yesterday I rang to make an emergency with Rheumy, the lady I spoke to sounded a little harassed and couldn't give me a date and said she would ring me back when she had spoken to someone else about it, I haven't heard back from her so will try again this afternoon. By the sounds of it I'm not holding any hope of an appointment in the next few weeks, I have an appointment booked for October but that seems so long to wait! Why say "if there are any problems come back and see me" when the chances of it happening are so slim? Will let you know how I get on.

Thank you all for the support, you keep me going, you really do!

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