DH probably has rheumatoid arthritis - anyone else in same boat?

[mears]

DH has had very painful joints over past week. Has had aches and pains over past few months. Blood test done last week shows he has rheumatoid factor, raised CRP and raised ESR. GP didn't want to commit himself to saying definately RA but I am sure it is. Anyone out there with personal experience?
I have asked that DH be referred to specialist sooner rather than later. We want to know what we can do to delay any worsening of symptoms.

Think Twiglett knows about this (may be wrong). If you keep bumping someone will answer, I am sure.

No advice mears, but for you and dh

Yes, I'm sorry about this too.

Twiglett's dh has psoriatic arthritis, as does my dh, Mears. I don't know if that's similar to RA but Twiglett is the expert. I hope your dh improves soon, arthritis is rather cr@p.

Thanks for the responses. He is feeling better but we will feel better once he has been reviewed by the consultant (appt.no sooner than 20 wks). We have got some books out on managing arthritis without drugs, so will see how he gets on. Will catch twiglett if she is around.

Dh is developing this because he has psorasis. He takes Cod Liver Oil capsules which he says helps, and he does a lot of exercise. But he can feel it at times, at the mo he's just trying to put off the inevitable.

Mears, I'm very sorry. My university tutor had this - a very lovely man whom I think about very often still.

My best mate's sister has it (very badly I'm afraid) and I can find out what is on offer. Also a school friend is a rheumatology nurse and another friend works for the national rheumatology body. Do email me if you would like.

I have RA in one joint (elbow) -- have had it for over 20 years and so far it has not spread (touch wood) ... there is a lot of evidence that RA could be related to food and allergy so might be woth researching that.. I find mine gets worse if my diet is poor... new research indicates that high levels of Vit C is good...

I also found magentic bracelets useful and acupuncture..

get referred to an occupational therapist - they can give you advice about how to carry on with all your usual activities of daily living and can get you adaptive equipment that can help to protect you joints from further damage. Prevention of joint destruction is the aim

ie jar openers, big handles on things if you need them, long handles on brushes, combs, shoe horn etc doesn't even need to come from them - lots of places sell it at cheeper prices than "disability shops".
OT's also can teach you about relaxation, managing pain and what is happening with the disease. At the hospital I work in most RA patients see the clinical nurse specialist moire than the consultant - but i suppose you need to be diagnosed first
Hope its not gonna be that bad for you.

A lot of the medications I take to stop my transplant rejecting are also used in much lower doses to dampen down the immune response which causes the inflammation in RA.They are very effective although it is also one of those things that can go in to remission for long periods too.Hope your dh gets the help he needs xxApparently very strong ginger infusions is very good for this

mears - i developed this three years ago. I was diagnosed with sjrogen's syndrome [ one of many auto immune dosorders affecting the joints.] All my joints swelled up almost overnight and moving was walking underwater. rheumatologist put me on a short course of steroids, and i declined to take them long term. Also gave me ant inflammatories, vioxx, which have now been taken off the market due to heart damage risks. I decided to go the alternative route rather than stay on drugs forever. I took MSM, Cod liver oil, glucosamine and chondroitin [excellent] and devil's claw. When i got pregnant i stopped taking them and and i went into remission - still ok now 14 months after ds born. the odd painful joint. So your dh can improve. My dad has recently had very bad knees and i suggested glucosamine/chondroitin and cod liver oil. He is much better. HTH.

moving was`LIKE walking underwater!

Hi, I have also been recently diagnosed with rheumatoid after all sorts of false starts and other possibilities. I resisted any medication at first but have learnt the hard way that walloping pills until you get on top of the pain is best!.......also huge link between pain & stress - stress actually causes a 'flare'. It is really tempting to stay in bed when pain intolerable but getting up is best. I force myself to potter if I can't do anything else. I wrestle with guilt as adore my dh and kids and don't want to be a burden or a drag and know my temper is awful when I'm in pain (hence pills). It must be horrible to have sick partner as you can't normally see RA and we all get aches & pains...it must be hard to feel tired yourself and have sick husband or wife just constantly tired - I think my dh has no idea the efforts I make just to get dressed every day.
I have just got my doctor to get me a blue badge after trying to pretend nothing much wrong. Now I'm looking forward to getting out again as have been increasingly isolated by difficulties getting around. I would be very wary of anyone who advises 'alternative therapies' only. Sure, they can help - but these other people don't know the severity of the illness..RA is not like other arthritis that is confined to one joint. The web is great for info, check out arthritis sites and loads of love and luck to you and your family.

noone suggested alternative therapies only allgrownup! Just sharing what helped me.

ruty, not sugesting you did - also not underestimating nasty side effects of conventional drugs as have suffered from many myself....but, well meaning people who don't have similar conditions often do suggest natural alternatives only. If anyone has got a miracle cure then morally obligated to share it of course!I think what this illustrates is how everyone's experiences are different. It is very frightening to be given an open ended diagnosis (almost worse when they don't diagnose) and there is'nt much support around. (If anyone does know of support groups etc please do mention it). Also, lots of people are frankly not very nice about disability and seem to think people can wish them selves better - if only.
Instead of waiting and worrying for months why not get a private referral for the first consult? the bad news from my own experience is that getting diagnosed is not straighforward at all......that does'nt mean that you can't get treatment though. do look at the arthritis groups websites, the er is a UK one and an excellent US one also.
Also, try not to immediately think of worse case scenarios .......some people recover. I hope to.
sorry if this long winded.
(ruty - I was diagnosed vioxx also, and after it was banned - I changed my consultant as lost faith in him)

Sorry to hear this mears. I'm far from an expert but spent a bit of time working in a couple of Rheumatology departments as part of the research I was doing into pain perception in RA (my background is psychology, not medical). I think you are quite right in getting him to a consultant as soon as possible. I found that the quality of care differs quite dramatically in different hospitals - in some departments things like the blood test results which patients would religiously go for each month weren't looked at so that any variations that occurred weren't being noticed and appropriate action wasn't taken.

The department I spent most of my time in has just won 3 awards for the outstanding care that patients receive. How it works is that patients are referred and see the consultants. Once the condition is stabilised then they are referred to the Rheumatology Follow Up department, where they are usually seen 6 monthly, or more often if necessary. There is also a helpline where you can ring if you have a flare and they get people in immediately to do whatever appropriate eg inject the joint, alter medication. Each month when the blood tests come in they are charted and on each assessment all the joints are assessed to check if there is any progression.

As I was leaving a greater emphasis was coming onto patients education and they were organising groups to give them all the information they needed. I know there was a lot of importance attached to the correct type of exercise. The department has a website here which I think gives some details for the current drugs that are being used and some information on exercises. Sorry not to be more concrete about any of this but I am now very out of date as things have moved on a lot in the last 5 years. There is absolutely loads of research going on and I imagine that they have made a fair amount of progress in that time. I know most of my post isn't particularly helpful but I hope it will give you an idea of the type and quality of care of treament he should have and if it's not forthcoming give you some idea of what to push for.

Meant to say that it's probably worth getting in touch with www.arthritiscare.org.uk & www.arc.org.uk for up to date information.

Thankyou all for the info and the link kittypickle. It is so true what has been said about worry about taking drugs. DH isn't keen to have to take them however we do realise if there was a miracle cure, everyone would know it. He has got a couple of books by Margaret Hills which gives dietary advice. He is also going to see a hoeopath locally who is also a trained doctor although she specialises in homeopathy now. She has a very good reputation especially with helping arthritis suffers. Hopefully changing lifestyle and diet will help him and we will take whatever advice the consultant rheumatologist gives us. Hopefully we will get a more certain diagnosis from her.
DH certainly is feeling better. He returned to work today. He may be one of the lucky people who has occasional flare ups. The link you posted was helpful in that respect kittypickle. I will get him to read it later when he comes home. Thanks again everyone for you experiences.

mears -- just to say that I have read the Hills book and one of the things that I did find helped was the cider vinegar and the epsom salts baths that she recommends... am not sure about the diet myself as it contradicts a lot of new research but I think that in some cases RA is related to an immune response to a food allergy and maybe that is what worked for her...

this is also an interesting web site to read...

one persons attempts to control their RA

I agree with who ever said don't just do alternative -- the conventional treatments are improving all the time and I find that at times, a steroid injection gives me the movement I need in my joint that is most effected... however, I do seem to be able to control the pain in other joints with the vinegar and acupuncture and exercise...

Thanks mancmum. He is taking the cider vinegar and honey which he says is foul. He is also taking blacksrap molasses which is even more foul. Apart from that, the rest is just a switch to more healthy. Wholemeal bread, skimmed milk, white meat, no alcohol etc. It is hard not to go a bit overboard initially I think. He is also taking cod liver oil supplement with glucosamine and vitamins. He surviced work and went to bed early. Just has a few pains in his foot tonight. Much better than a few days ago. Probably was subsiding anyway. Fingers crossed.