Hi i have Poly RA, but though inflammation is zero i have pain everywhere and my hands are getting so bad, but they do not believe me. Why

[dobsey]

my blood count was originally 500 but now is zero on inflammation but the pain is getting worse and does not go away, it is everywhere.

[pineapple_head]

Hello Dobsey, sorry to hear that you are in pain. Are you being seen by a rheumatologist? Which test was 500? I hope that you are able to get some help. It is really hard to be strong when in pain. I wish you my very best. Please give us a bit more information as to whom you have seen and what treatment you are currently on. You take good care.

[dobsey in reply to pineapple_head]

I am on methotrexate and sulfasalazine. Hydroxychloroquine

Won't put me on biologicals yet

I think there is something else wrong. As why all the pain still and no inflammation

What do you guys think

The 500 count was the inflammation things in my bloods. They said mine was extremely high

This came on overnight went to bed fit, in the morning was in such pain And I was on holiday in France

Will this eventually go away do you know

[Hidden]

Do you perhaps mean Palindromic Rheumatism or PMR (Polymyalgia Rheumatica)? As Pineapple-head has said I'm sorry you are in a lot of pain. Twitchy

[dobsey in reply to Hidden]

Pmr. As I have it everywhere and pmr is more than five places. Is that correct

If you don't fit in to a certain category Slot etc. They don't believe you

So no inflammation. Then they say no pain. Wrong big time. I have pain all the time and even now my ankles are so sore and my fingers and toes as well

I am worried that this is going to get worse. Does anyone know

[Hidden]

I am really sorry but I only know a bit about PMR. My mother-in-law has it but was told that it only lasts for about 2 years or else for an unlucky few it can progress to Giant Cell Artritis - a type of Vasculitis. When her pain continued, despite her blood levels falling to okay she was told she has Fibromyalgia so it might be worth learning more about this condition too.

PMR is not at all the same as Rheumatoid Arthritis and is not usually diagnosed by a rheumatologist but by a GP. It is mostly a problem for over 60s I believe whereas RA (or Rheumatoid Disease) can affect people of any age and is a disease for life in most cases. Your best bet might be to go to the Vasculitis UK HealthUnlocked to find out more about GCA but i imagine this shows up in the blood. Hope this helps and good luck getting the pain better controlled. Twitchy

[dobsey in reply to Hidden]

It is RA that is the diagnosis

I have two consultants They say it is in more than five places so maybe not pmr

Still confused why I have the pain

[dobsey in reply to dobsey]

I take 25 ml mtx once a week

1000mg saint if Sulz and 400mg daily of hydrox

[dobsey in reply to dobsey]

Saint if should be of. Sorry

[Hidden]

Dobsey is on MTX, sulfa and hydroxy, so it sounds like you do have RA. Poly just means "multiple joints". It isn't commonly used before RA as the diagnosis assumes you do have more than a few joints involved. I was diagnosed with inflammatory polyarthritis before they settled on RA as a dx.

[dobsey]

Thanks guys. But what about the pain. Should I have pain permanently without inflammation

[Hidden]

Yes sorry Dobsey I hadn't seen the previous comment about the drugs you are taking. Crashdoll is right these drugs would not be given to someone with PMR alone so you probably do have RA or some type of inflammatory polyarthritis. Mine presented all over the place initially too and I didn't have visible swelling for about 6 months but my inflammation markers were high. It is possible to have PMR and RA and Fibromyalgia so they should be able to help you more with your pain. If they don't think the pain is inflammatory just now then perhaps they should refer you to a pain clinic as apparently these can be very helpful if you can get to one. Have you had x-rays to assess if your RA has caused damage to your joints yet? If it has then this could be the source of the pain too. I would really push to attend a pain clinic if I were you.

[Shreeve1979 in reply to Hidden]

I am on all those drugs for diagnosis of RA and have also just started on biologics and still getting pain although am on 10mg of steroids at mo as well

[dobsey]

One more thing guys sorry to be a pain

Concentration. I am losing concentration and my mind thought just goes blank Someone said this is the chemo. Is this correct

[Hidden]

If you mean the Methotrexate - yes I believe for some people it can affect your concentration. All these disease modifying drugs are strong and can affect us in all sorts of ways and you are on the highest doses of all three drugs by the sound of things.

[dobsey in reply to Hidden]

Thanks twitchy toes

Really appreciate it

How are things with you is everything ok

Does this eventually go away

[pineapple_head]

I'm not sure how long you've been on the DMARDs but they can take up to 4 months to take effect. Unfortunately, there are some people who take a long time before things settle down. Some people keep having pain and it doesn't settle. Just keep in there and try not worry too much. I know it's easy to say this but worrying will make matters worse. I wish you the best of luck and we are here to give you support!

[dobsey in reply to pineapple_head]

Thanks pineapple. You guys are really nice people

I feel sorry for these young people who get this

I read that it is a hole in the gut that causes leakage and the Auto Imune to attack you

This doc on the Internet says diet will help fix the hole and RA will be cured

Have any of you seem this or heard it

[Susiej38 in reply to dobsey]

Hi Dobsey, So sorry you are in such pain even with all the meds. I have not heard of diet you are referring to. How long have you been on the medications for RD/ RA? I am on Methatrexate, 20mg. Wkly. It took over 3 months for me to get relief, and at first I thought the MTX was making pain worse. I would ask my doctor for some kind of pain medication. You need something fast to try and help! Also, have you had an anti-CCP blood test done? It is usually ordered by a rheumatologist and it is usually positive in people with RD/RA. I know how you feel and it is hard not to panic when pain comes on so aggressively. It is frightening.

[dobsey in reply to Susiej38]

Been on the meds 9 months

The pain is permanent

But do get flare ups which are worse

Had MRI and x rays

I am Positive for RA

Trying the three meds together now. If goat gains I will go On biological meds

Just can't believe I have all this pain

They have offered opeuts but I have refused them with pain I know it is not fixed yet

[Shreeve1979 in reply to dobsey]

It is procedure for you to be on tablets form for 6 months before biologics are started I’m afraid or that what happen with me. Do you take predisolone ?

[Hidden]

Hi dobsey,

sorry to hear that you are in so much pain. It would be useful to know which blood test you are referring to. I have put a link to an article on our website about blood tests that you may find interesting:

nras.org.uk/laboratory-test...

Blood tests on their own may not necessarily be enough to indicate RA. It is possible to have RA but test negative for rheumatoid factor RF and anti-CCP (see article). See also the article on seronegativity and seropositivity:

nras.org.uk/seropositive-se...

Hope this helps you

Regards

Beverley (NRAS Helpline)

[dobsey in reply to Hidden]

I have tested positive in all tests Have just transferred over to nhs as I may need to go on bio medicines

[dobsey in reply to dobsey]

Def have RA. Three different consultants have confirmed it they have to go down the route of trying the dmards before putting me on bio meds

[dobsey in reply to Hidden]

I think the count was anti bodies in my bloods apparently average is 80-120

[Hidden]

The thing is that no one can tell you how severe or erosive your RD will be in the future. Each person's outcome is slightly different and there's no way of knowing who will go on to get the really destructive type of disease and who will have the slow type. Whatever type you have it will probably be for life as that's the nature of this disease.

However if you still have pain despite lack of swelling it might be worth considering Fibromyalgia because this can go hand in hand with all types of inflammatory arthritis for some people. I don't have this condition but it is meant to be extremely painful I believe. There are meds to calm down the pain such as Amitriptyline and others. The blood count helps get a diagnosis and sometimes can be useful to monitor the progress of the disease and response to drugs but it is really your symptoms that should count for the most.

[VeronicaF]

my inflammation markers are normal, but my swelling says not, and I am pos for RA

I am due to go on biologics soon

its all wierd