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?

Not a sufferer, and I'm sur that there will be people along soon who are more in the know. I used to work for a company that makes anti inflamatories. I do know that the data show that early intervention helps to significantly reduce the spped of progression. The earlier the intervention the less damage to the articulating surfaces of the joints.

I can understand that he doesn't want to take meds, but possibly a case of better now than later when there is more damege?

Has he thought about exercise etc in conjunction with drug treatment....doubly good for him and also giving him a significant eliment of 'control' in his treatment. My BIL has AS and he swims regularly which helps him no end, and makes him feel more in control.

How good is your GP and can he recomend things to do in conjuction with drug treatment? Sort of belt and braces approach?

Had to push GP for early referral to rheumatologist. He more or less said just buy bulk prescription for Brufen. He is planning to join a gym and lose weight. He will also call complimentary therapist tomorrow. DH feels there is no point going to hospital and not taking their advice. I agree but he really didn't want to hear today that they 99.9% think that is what he has.

I tried to chear him up by complaining that the leaflet said he could still have sexual intercourse but he wasn't impressed

hi mears sorry to hear this, I met a lovely rheumatologist recently i'll dig out his details for you tomorrow, when I'm back at work, x

i ahev never met a rhematoid arhtirits person at work but i wanted ot say hi
men wiht joints poblems aer hardwork arent they

My step dad has this, and was astonished when he gave those copper bracelets a go, they really did improve things for him. They probably dont work for everyone though.

It has oddly improved dramatically too since he and my mum moved to Lanzarote, he now blames the polution in the uk

Hi Mears

Sorry for your news

The trouble with any arthritis is that early treatment can indeed be damaging in the long term .. however DH, with the approval of his rheumy avoided DMARDS for a long time (managing with NSAIDs) for a few years and did try many alternative therapies

acupuncture worked for a while .. but lost efficacy
nutritional advice .. he had intolerances identified and went on different diets for up to a year at a time.. he just looked ill and was miserable on them
chinese herbalism / naturopaths .. seemed to be quackery .. although tried for months
there were others .. don't recall now

Anyhoo .. once he finally started on the DMARDS he did try Sulfasalazine which was a remarkable treatment for DH .. unfortunately he had a skin reaction to it so had to come off it .. I believe it turns your urine an amazing colour too (orange? yellow? .. don't remember

Now he's on methotrexate and our life has changed beyond recognition in the last year .. for the better

he's not rheumatoid arthritis though .. he has psoriatic arthritis / ankylosing spondilitis

am here to talk .. or cat me ..it can be really difficult as a partner to someone with a flaring illness .. but not impossible

ibuporfen is a good anti-inflammatory .. but has to be taken consistently as it is the build-up that is effective and not the one-off pain reliefs ... DH took this for a couple of years before moving on to the 'good stuff' [

oops .. just in case

DMARD - disease modifiers (disease modifying anti-rheumatic drugs)
NSAID - non-steroidal anti-inflammatory drugs

I used to be a med info officer for ibuprofen.

It can have a stunning effect for some patients with RA, but others need to 'shop around' to see what suits them best.

Key is not to get too dispirited during that phase IYSWIM....easier said than done I know.

While I realise he doesn't want to be dependedn on meds Ibuprofen has been taken by around 1000 million people world wide and is about as 'safe' as anything gets.

Weight loss is a good thing to do (note to self....do some!) and again puts him in control.

oh and slow release ibuprofen is often better at reducing early morning stiffness in the joints that many RA patients get. You have a better level of drug through the day, and don't get the saw tooth peaks and troughs of conventional release.

I think he needs a little bit of time to get used to the idea and also to realise that a lot of people lead very normal lives a lot of the time with it. I can' be of very much help I'm afraid but did work in several Rheumatology departments as I was doing research into Pain Perception in RA. A number of patients did use various complimentary treatments but generally ran them alongside drugs such as Sulphasalzine, Methotrexate etc. One thing I did get from having experienced several hospitals is that the standard of care is fairly variable and it's important if he makes the decision to go on a drug that needs regular blood tests, that you get to see the blood results so if at any point any problems show, they are caught very early. Unfortunetly some of the staff in one hospital were so pushed that the bloods were going unchecked.

From what I have seen it is better to get in there early to try to have minimal joint damage. Also agree with Martianbishop about the exercise and about taking control. The last department I worked in which have won several awards for their RA care, were very big on both of these. It's 6 years ago since I worked in a Rheumatology department and I'm pretty sure that in this time there have been several new drugs that are promising and there is a whole stack of research going on in the field.

I don't have RA but i do have psoriatic arthritis since the birth of dd2 nearly 6 years ago.Iwas not keen to take DMARDs because of the side effects,(particularly the worring line in the leaflet along the lines of if you do suffer these side effects stop taking the drug and most of them will disappear.I found that reflexology helped me most I had it once a week for a long time.at one time I could barely walk 100yds,couldn,cuddle dd2 or change a dirty nappy,couldn't turn on the cooker or washing machine, barely flush the toilet etc (it was bad enough to get direct payments for help at home and a blue badge).Ialso find that eatig wheat makes my joints hurt but not straight away takes a while to affect them also find it makes me feel very tired.

Thanks for your posts. I am wondering if he is being put on DMARD too soon? He has only been taking homeopathy for 2 weeks tops. If he takes regular Brufen his joints are better. He was trying to cut down to twice daily. He is going to join a gym and lose weight. Are these startegies worth trying before going straight os sulfalazine? Unfortunately we have a friend who has RA and even methotrexate is not helping her ATM. That is what he finds so worrying. How did your DH get his head around it Twiglett?

MB - which slow release brufen product ?

don't reduce the ibuprofen, as too little is a waste of time, tbh. If he is pain free, we will move more easily and that is better for his state of well being, and also is less likley for him to end up with muscular probs if he is moving awkwardly IYSWIM. You need to get to get to a therapeutic dose as Twigg says.

As I was leaving the 'trade' the publications were pushing for earlier use of preventatives, so that it significantly reduced the amount of damage in the joints. Once the damage is done, it is done. Twigg will know more about this.

Brufen SR. It is brufen in an algenate gel, that is slowly worn away in the gut. You take a bigger tablet 800mg iirce before you go to bed. That way you still have a therapeutic does in the morning to combat early morning stiffness.

If you take the conventional prepas you level dips over the night.

As with all this stuff it doesn't help everyone, but it is worth asking about.

You also don't get as big a peak serum level

brain fart, Brufen Retard

sorry

Brufen Retard SPC

Thanks for that.

Thanks for that.

I think Mears that dh would be advised to get a referal to a physio who specializes in Rhematoid conditions. If I remember correctly (I'm a neuro physio) RA needs care with exercise especially during acute flare ups when he may need rest and night splints to maintain joint positions and exercise only during the more dormant phase. Also IIRC weight bearing ex. such as he may do at a gym also needs careful supervision not to over stress the joints.

excellent advice

Thanks PollyLogos. DH isn't as bad as he was in October last year. What is troubling him is that after the flare up he had then the symptoms disappeared. This time he had a less significant flareup, but he has continued to need anti - inflammatories or his joints are painful. When he had the flare up he couldn't even raise his arms above his shoulders. I think he will try the Sulfalazine as that is what has been advised. he is so worried that he may have a progressive form of RA

Am off to bed and going to work tomorrow. Could you keep this bumped for me tomorrow anyone who is around. many thanks, mears.