Pmr

[Nursemaz]

Hi I am new, my name is Maz.

Back last year in March I started to have pains in the back of my legs and also my arms started to hurt from the sho uhh elders down t onwards my elbow especially the right arm. If I had been holding my phone or kindle and I would try to straighten my arm it would be very pain g up. I also was having cramp in my feet each night and also in the back of my neck going up to the top of my skull which was very painful.

I had an on going sinus problem and had an operation end of May and five days later I had four blood clots in my left calf. I was put on anticoagulant rivaroxaban which I was allergic to and was put on apixaban. I started to ache eve f anywhere my should e rd and as Mrs when I stood the bottoms of my feet hurt and first thing in the morning I could only stand and wait a few minutes until I could put weight on my feet.

I was also having this crushing feeling in the middle of my chest I was admitted to emergency twice I was given a angiogram and I then got a huge blood from my right wrist to my elbow and was put on warfarin, it was discovered that I have factor five leidan.

I have had so many blood tests. As it was thought I may have lupus which I don't but also I saw a rheumatoid doctor who is looking for vasilitis and giant cell I asked him if I could have polymyligia and he said I am putting that to the bottom of the pile as it is not life threatening. He had the nurse take bloods and then said I will see you in March.

I was in tears as March seems like a year away to me as I feel so ill all the time and they have given me Saladin co-codymol which I am living on. I have such bad pains all over and in my neck and on the side of my head and my eye hurts.

Just wondered if any of this sounds like Omar. I feel so abandoned n ed and just left to get on with it.

Sorry this is so long

Thanks

Maz

[piglette]

Hi Nursemaz, does the co-codymol have any effect on the pain? If so it possibly is not PMR as Steroids are about the only thing that helps PMR pain. Can you talk to your GP, it seems that rheumatologist work on a quarterly cycle!

[Nursemaz in reply to piglette]

Hi thanks for reply, yes the co-codymol takes away the pain about 80% if I don't take it as it keeps making me so constipated the pain in my neck and shoulders and arms co m especially back with such a vengeance.

They sent me to see a rheumatoid doctor which came up the quickest he said I don't know why they sent you to me as we are different trusts and I cannot see any medical history about you. I felt he was not interested.

[PMRpro Ambassador]

Oh well - I suppose that answers why we struggle to get noriced by rheumies "it's not life threatening"! No - but it b£**%" hurts!! All I can say - if he's looking for life-threatening and isn't seeing you until March, he can't be that concerned.

The main problem is that PMR is just the name given to a set of symptoms which can have several underlying causes - some nastier than others and it DOES sound as if he is trying to work out which. You rule out everything else - and see what is left.

I wonder why he didn't try you on a short dose of pred - it does answer some of the questions.

[Nursemaz in reply to PMRpro]

Yes I wished he had of tried the steroids, it's so upsetting to be left with all this pain everyday. I used to walk my dog twice a day and go two miles, I have a large garden and veg plot and now I cannot even walk down the garden path and when I get cross and think I am going to walk the dog or do something in the house the next day I pay for it with real pain especially in the neck shoulders and arms.

[Nursemaz in reply to Nursemaz]

Sorry forgot to say I have had a hoarse throat for two months they had an ent look at the vocals and said they were clear but now sending me again as its worse.

[PMRpro Ambassador in reply to Nursemaz]

That is also a symptom listed under GCA - and your description of holding a phone could have been me. BUT - if co-codamol works to relieve your pain it does reduce the likelihood of it being GCA/PMR since they MAY respond to NSAIDs (ibuprofen or naproxen) but even that is unusual.

I agree with Keyes feeling it is more likely to be another vasculitis - as she says, there are plenty of them - and I think you should call their helpline to discuss it with them.

[Nursemaz in reply to PMRpro]

Thanks

[HeronNS in reply to PMRpro]

My response to "It doesn't kill you" is "When you're untreated you wish it would". The doctor I said that to looked quite surprised by that remark, and she was that well-informed locum who helped me out this summer!

[Hidden]

Hi Maz,

With the sinus involvement, blood clots and other symptoms it made me think of other Vasculitis variants rather than PMR or GCA. There are over 18 different types of Vasculitis, all of them rare.

Are you in the U.K.?

[Nursemaz in reply to Hidden]

Yes I am in the UK, I did not real u sed about the vasilitis on the nhs website I have only seen the one.

[Nursemaz in reply to Nursemaz]

I would be grateful if you could give me any info you have found so I can look it up.

Thanks

[Hidden in reply to Nursemaz]

There is a national charity called Vasculitis UK, I am part of the helpline team.

Feel free to phone or e mail the helpline if you would like to discuss this further. Vasculitis are rare, complex diseases, often the only way to get a diagnosis is to see a Consultant with good knowledge and experience in treating it.

vasculitis.org.uk/helpline

Best wishes

Lynn

[Nursemaz in reply to Hidden]

Thanks I have been told I will be on warfarin for life because of this factor five leidan. In the past I have had a hysterectomy and a bladder uplift and did not get one blood clot I know it was 25 years was ago. When I had the sinus operation the General anaesthetic was only half an hour and the consultant who saw me with my dvt said he felt there was an underlying problem I guess he was right.

Trouble is all the blood tests come back all ok and it feels like the doctors don't believe you and I can't tell you how ill I feel.

[Hidden in reply to Nursemaz]

It's difficult to go into everything on here as there are lots of questions I need to ask you.

I am not saying you have a Vasculitis variant but talking things over by phone or e mail may help. Please get in touch if you think it would be useful. My e mail address is on the link above as well as the helpline phone number, I am manning the helpline at the moment.

Lynn

[Nursemaz in reply to Hidden]

I have found the link and had a quick look and saw the helpline number which I was going to ring tomorrow is this the link you mean so I get to talk to you.

[Hidden in reply to Nursemaz]

Yes, it is the phone number I was referring to.

I will be around first thing tomorrow morning and then later in the day, if I am not in when you phone leave a message and I will get back to you when I return.

It might be worthwhile having a look at the information on the website as well beforehand and the different Vasculitis types.

[Nursemaz in reply to Hidden]

Have sent you an email.

But will be in touch tomorrow afternoon.

Thank you

[Jura1959]

Do sympathize with you Max because my doctor seemed cock sure mine pmg but since then he not so sure getting cheeses off with blood test and like you the pain is incredibly bad.

I'm also diabetic and being on steroids do not help with that

[Tonylynn]

Do make sure you are teted for Lyme disease. It is a great mimic and getting much more common.