DH has been diagnosed with rheumatoid arthritis - what to do?

[mears]

Dh has seen rheumatologist today who has diagnosed RA. He started having symptoms last year which settled but he has had pain in his fingers, wrists, ankles, toes and balls of feet since may. Has been on anti-inflammatories since then which do help but he knows when he misses a dose. He saw a complimentary therapist 2 weeks ago who specialised in arthritis treatment and is well known. He is taking pills and powders that she has perescribed. He has been advised to start Sulfalazine which reduces inflammatory response in body, however there are side effects.
He is in a real quandry what to do. The information leaflet he got from the hospital today (arc) advises not to rely on complimentary treatments as you run the risk of joint damage. Early intervention is important. He doesn't want to take medication though.
Any sufferes out there with advice?

I haven't read any of this I'll admit cos I don't like reading health threads (I give myself all kids of ailments)

so if this has been said before then ignore it; equally if it's not relevant

the guy at my health food shop recommends giving up all foods from the deadly nightshade family - tomatoes, potatoes, peppers (inc chillis), and aubergines for two weeks to see if it goes off

then have something loaded with them like a moussaka to see if it comes back (it can take up to two days)

sounds a bit batty and hippy, which is what I thought, but I have rheumatism and it does seem to work. he said it did for 50% of people

DH retreated into a cave for about 3 maybe 4 years .. from when DS was 8 months old really

he used to pop his head out sometimes and it would feel almost normal .. but then he'd flare and disappear again as something else gave up the ghost

I won't say it was easy .. it was pretty shitty at times .. it felt like I was constantly going through the cycles of grief as my ideas of the future changed and changed again ..

BUT .. now he's sufficiently medicated and responded well to treatment (its a long haul .. trial and error .. 6 months at a time to determine efficacy) .. its becoming a distant nightmare

Mears, flare ups and dormant phases is the pattern with Rheumatoid arthritis, thats why it is treated very differently to osteoarthritis. Ankylosing spondylytis is different again, All these different types need different approaches to exercise. I really think he should get some advice about exercise before he starts.

I have RA but thankfully quite mild and localised to a couple of joints... I have a fab consultant and my treatment consistents of steroid jabs tojoints when they get out of control... one thing I did was ignore the pain and tried alternatives... and now have lost bone around some joints... no getting that back!

I think it is a personal choice but huge improvements have been made in the conventional treatment of RA and there have been some fab success stories... read the websites of the support groups... I found that acupuncture helped but only or a while... as did massage/diet/modification.... drugs however seem to work the best for me.... and for me it is better to be pain free and taking something that stops the damage.... they are ever closer to a cure for this .... huge strides have been made in the last 10 years -- I watch very carefully... so why risk the damage by not starting now?

Hi, i'm Jessicaandrebeccasmummy's sister in law. She asked me to post as i have RA. its pretty crap to be honest. I'm on Methotrexate, Sulphasalazine, prednisolone, plaquenil, Humira and plenty of pain killers!!!
I am 28 and have had it for 7 years. have used a crutch for the last year but am still working in childcare. The Rheumatologists at my hosp are fab. i know the side effects can be unpleasent and quite scarey but well worth it if i can have some sort of life. now off to work but if i can be of any help just ask jessicaandrebeccasmummy to give me a shout. hope all goes well for your dh

bumping for mears .. anyone else any comments

PS That's nice of you J&RM's SIL .. very nice

I have an undtermined auto immune codition which flared and relapsed all through my childhood and everyone just thought I was a sickly child.A few joints were affected and eventually my kidneys(don't worry not a complication of RA)The drugs you mention here are immuno modulators and suppressants which are what I take as anti rejection medicine for my transplant they do have side effects but according to research recently it seems that small doses of a few drugs minimises serious side effects rather than a big dose of one.Stress is hugely important in causing these diseases to flare I hope you dh has a good consultant and gets the help he needs

Thanks very much for your posts.

He says he is feeling better about it today Twiglett - he was mad yesterday when they confirmed the diagnosis. He was going through the 'why me' bit.

Mancmum and noddyholder - He's on night shift tonight so he will start the meds tomorrow. Agree with what you both have said. Important that he takes advice he is given from rheumatolgist who has an excellent reputation.

PollyLogos - will get proper advice re exercise. I am sure there is a physio at the rheumatology clinic - he has to go back in 6 weeks for bloods so he won't start anything before them.

Jessicaandrebeccasmummy's SIL - thankyou so much for taking the time to post. That was really kind

just a bump for any other input.

Hope his response to the drugs is excellent, mears.

FWIW, on the weight front, I've been doing Weight Watchers for about 8 weeks I guess, and also got a Fit for Life referral from GP to the local gym. Been doing gym and pilates for about 5 weeks I guess (instructors are specially trained and more familiar with health issues than most 'normal' instructors IME). The combination of the two (as well as doing WW at the same time as dw and FIL) have had a great impact (several inches off the waist and 1 stone down so far).

Mears .. dont' mean to be pessimistic or anything .. but on a personal front we found that adjusting to the diagnosis of a chronic disease was very similar to the 5 stages of grief

denial
anger
bargaining
depression
acceptance

of course not sequentially necessarily .. but in some way I feel I as a partner (could speak for DH too) went through all these stages every time a flare kicked in with some new area affected

BUT as I said before .. the last year has been unrecognisably fabulous, relative to the previous 4, since we found the right medication

the BIG problem with arthritic conditions is other people's experience can have little or no bearing on your own .. some people who are diagnosed spend their entire life with just a joint or two that ache during weather changes .. other people have more symptoms

mears, only just seen this...

I've been on sulphasalazine for six months now, for a similar condition, and although I can't say that it has made an awful lot of difference to my symptoms, I've had none of the side effects that I was warned about. Been out in the sun with no problems, bloods fine, no stomach upsets. Very "strong" coloured urine though!

Suspect I know the homeopathist you mention (she's a local GP too?), she treated my dd for alopecia (a related condition too) and it didn't make a noticeable difference, though dd loved taking the powders!

Is your dh seeing the local rheumatologist, or perhaps the scary lady at GRI ?

I've found that swimming makes a big difference... not by controlling my symptoms, but I feel fitter, and sleep a lot better if I've had a swim.

AFAIK, the emphasis in the conventional treatment of RA and similar conditions is to get in with the DMARDs before there is any evidence of joint damage on Xrays; it prevents deformities later on in life.

Let me know if I can be of any help.

hi mears, lots of brilliant advice on here. Here's a link to a transcript of a programme i made recently with the lovely rheumatologist, david eisenberg from univ college london, hope there's something of use here..xxxx

I would advis eyou to let his work and friends and family know aswell as people just think arthritis is achy bones but my consultant told me OA and RA are as different as black and white OA is only wear and tear and whilst it is limiting and painful it doesn't have the impact on the whole persons well being that RA does.New immune drugs are appearing all the time and the side effects are less and less

How do you get a Fit for Life referral Hub?

Thanks for the link Bundle - will have a look shortly.

Noddy - I told him to tell occupational health ASAP. He did see the nurse when he had symptoms before and she said to put himself first - very nice lady.

Twiglett - you are not depressing at all - we both have discussed those types of feelings. He certainly has had the anger and denial. Funnily enough, yestaerday he said he feels a bit of pressure has been lifted because he now has a diagnosis. We will just have to deal with things as they pan out.

Tissy - I don't think it is the same person you are thinking about re homeopathy. The person think you are talking about is a practising GP who does homeopathy on the NHS. This other lady is GP trained but does exclusive homeopathy on a private basis. DH is seeing the local rheumatologist lady consultant who comes highly recommended. Is the GRI another option if further input needed? Glad to hear you have not suffered from side effects - that is DH's main concern. He's on his last night shift just now - works 12 hour shifts, 2 days/2 nights and they tend to throw him off a bit. Tiredness makes him sore. Will see how he gets on with new meds - has been told it will take 3 months to become effective.

Thanks for all the info.

Bundle - that was really helpful Have e-mailed it to DH

Mears my sister is a homeopath in her final year and she has had some excellent results.She lives in Epsom in Surrey is that near you?She would be willing to help xx

Thanks for offer but I am up in Scotland. The homeopath he is seeing has a really good reputation and 'specialises' in homeopathy if you like. Only thing is DH went to see her 2 weeks ago then had hospital appointment for consultant. The info he has been given from ARC says that alternative therapies have not been shown to be effective and you should not delay conventional treatment and risk damage to the joints. He phoned her and told her that he was advised to start DMARD. She said to continue with her treatnet too but to make sure at least 1 hour space between homeopathic remedy and drugs. Will see how it goes.

Re: Fit for life (don't know if it exists in Scotland) but essentially one hauls one's fat ass to the GP who, if they think you are at greater risk of a cardiac event due to health / lifestyle (in my case sedentary existence on puter most days) they refer you. They also refer people who have cardiac-related histories, so they instructors at they gym seem to be especially clued up. At the end of the day though it involves hauling ass to gym.

I have found that homeopathy doesn't work for me as the conventional drugs are just so powerful but my sister says that in patients like this it is sometimes better to treat at a low dose continually until you get results-

sorry to hear about your husbands diagnosis. My nan has had terrible RA for years now (deformed fingers and toes). She has had acupuncture for ages now and up until very recently she has been able to control any breakthrough pain with paracetamol every now and again.

apparently green tea is good for easing the symptoms ( sorry if this has already been said )

mears, local lady rheumatologist does have a good reputation; I was referred to scary Glasgow lady before local lady was appointed!

Our homeopath was quite happy about dd having both homeopathy and conventional treatment together- said they work in such different ways and treat different things, IYSWIM.

Have you used homeopathy? Do you think it is worth asking for referral to NHS homeopathy DR? I think if hoeopathy is thought not to work, why does GP treat on NHS?

Anyway, the dreaded medication was started yesterday. Has to build it up over 4 weeks.

I haven't used homeopathy for myself, but am considering it, as the sulphasalazine isn't making a lot of difference and I'm worried about methotrexate, which would be the next step.

BTW, are you able to log onto MN at work? I went in this am, and found it blocked! Could still get onto BBC news though. Have they found me out?

Haven't tried recently - am on holiday next week but will try when I get back. Attachments are constatntly getting blocked so I think it will be a general problem. I got personal e-mail from IT when an attachment was blocked which was a winzip file from someone else within the organisation! Had to confirm I wasn't breaching security. I think they would target you personally Tissy.

Had a good conversation with a friend of mine who has RA and has been through a few levels of medication. She started gold injections before methotrexate. She found them very helpful. She is currently on steroids, methotrexate and has started another drug in combination with the methotrexate which has now made a big difference.

Anyway, she was complaining to the consultant rheumatologist (same one as DH) that she hated putting all these drugs into her body for little benefit.

She responded by saying people have lost sight of the consequences of RA reulting in joint damage where people ended up having no mobilty at all. There drugs are preserving joint function and she wishes that the drug information leaflets concentrated on the benefits of the medication istead of the side effects. Yes there are side effects, but the consequences of not taking the medication can be far worse. That conversation made my friend feel better about it. She has only had slight deterioration of her joints in her hands (X rays) over the past 10 years. Without the drugs it would have been a different story.

Makes you think doesn't it?