Arthritis Forum
Home.

News.

Personal Stories. Links. Message Board.  
Arthritis Forum  
Add your comments to this topic Start a new topic
Date: 02.06.2012
From: Winni

Subject: Advice

Hi. My MIL has RA for about 4 years now. She hasn't coped particularly well and things are at an all time low now.
For the past 18 months she hasn't been on any medication for the RA. The previous drugs (metatrexate possibly?) have affected her lungs and she has difficulty breathing. She also has also had stomach a ulcers. The lung damage appears to be pretty bad for them to stop all medication? When she has a flare up she feels completely unable to do anything to cope with it. The consultants are confusing her. But she is set in her ways and won't even let my FIL go with her to appts. Frustratingly, we don't ever feel like we get the full story. She has come back from an appt very depressed. A new drug that was 'promised' which she was under the impression that not only would she be allowed to have it, but it would also help with her breathing has been put back again. She was also told that it wouldn't help improve her lungs.

I'm not obviously an expert on this condition, so forgive me if I've made confusing statements. But is there no alternative to the RA drugs? That don't have side effects of affecting her lungs? Has anyone else been through something similar. My FIL is worried sick and I feel like they've given up.

Thanks for your help x
reply | back to forum

Date: 02.06.2012
From: Colin W

Subject: Re: Advice

Hi Winni
they can treat Stomach ulcers , most of us with RA take omeprazole for it , the RA drugs can cause it , there is new nonsteroidal anti-inflammatory drug (NSAID)which are a lot better
dont know how bad she is because most of us here would be totaly cripled up not taking any drugs but the problem she will find is that it will damage her joints & that is why she should get it sorted

rheumatoid arthritis can affect other parts of the body like eyes / lungs & heart , dont know if her lung problem is caused by RA , they use Corticosteroids and immunosuppressive therapies help treat the complications

a good consultant should be able to help her a lot , you have to trust them
reply | back to forum

Date: 02.06.2012
From: Paula-R

Subject: Re: Advice

Hello Winni

Sorry to hear about your MIL and the problems that she's got, must be such a nightmare for you all. I don't like my husband coming with me to appointments, but I think that if I had the problems that she has I would want him there, for support and also to take in all the information about things that I hope she is getting.

The only thing that I can suggest to help you all is to ring the National Rheumatoid Arthritis Society up and have a chat to them. They may not have the answers but just to talk to people with some knowledge of the illness and the drugs available may be a help/comfort.

Phone Number 0800 298 7650

There is also Arthritis Care, they deal with all various forms of arthritis, not just RA like the above but they may also help. Not sure of their free phone number but you can google it.

Paula -R
reply | back to forum

Date: 03.06.2012
From: Winni

Subject: Re: Advice

Thank you, Colin and Paula.

She has tried a different drug for the RA after the methotrexate but she developed neuropathy which they believe could also be down this drug!

She has been told that she needs to meet strict criteria to go on this 'new drug'. She has to present 5 flare ups in one go and they are not allowed to include the shoulder, hip or knees? Is this common practice around the uk? She has a form of RA that is very sporadic and the flare ups can come and go very quickly and change position. I learned yesterday that they also think she has another joint condition aswell as RA.

We are hoping to convince her to take my husband (her son) to the next appt.
Forgive me, but how do you all cope on a day to day basis? MIL seems to really struggle with fatigue and any form of exercise.

Thank you.
reply | back to forum

Date: 03.06.2012
From: Colin W

Subject: Re: Advice

hi Winni , not sure what they ment , in UK to go on the new bio drugs you have to tried two disease modifying drugs like Methotrexate and then they do point scoring which is based on how many joints on the go at one time with your blood test results shown how active your RA is ,ie CRP/ESR , these are all set by NICE

the joints allowed are hands /wrist/fingers/elbows/knees & shoulders , I normaly got 8 to 12 of these on the go but my worst joints dont count which is my ankles & feet

Paula mention the National Rheumatoid Arthritis Society & Arthritis Care , they are worth checking , have a lot of information on there website

with RA , it varies from person to person , my sister has it but does not need many drugs , just a few NSAIDs sometimes & others with a lot of joint damage which need to powerful drugs to slow it up , its the joint damage you need to stop & she has to trust her doctors & let them help her
reply | back to forum

Date: 03.06.2012
From: Paula-R

Subject: Re: Advice

If you google NRAS and get on their home page, do a search for das28 score (search box top right hand corner) you will find links to help.

They don't use all of the joints, I think it is just 28 they check, hence das28 score. They don't do feet or hips. They do look at blood results and I was given a scale thing and I had to slide the pointer along until I reached what number I felt that RA was affecting my everyday life. 0 being nothing 10 being terrible. All of this is then used to work out your score.

They then have to do this again a month later. Problem is if you are in a lot of pain when they do the first score they are very reluctant to give you a steroid injection or let you take oral steroids because steroids will bring your inflammation markers down and they make wonderful pain killers. Not really fair I think to leave you in pain for a month.

I'm sure that the NRAS helpline will beable to answer any question that you have, right a list before you ring and then you won't forget anything.

Paula-R
reply | back to forum

Date: 06.06.2012
From: bsk

Subject: Re: Advice

Hi Winni

If they are talking about the biologics (or anti tnfs) they should judge by something called a DAS score. This measures how many joints (including knees and shoulders but not feet) are painful or swollen. They also include a quality of life score 1-10 - 10 being the most difficult and blood tests. these is repeated a month later. It helps if you are in the middle of a flare as you score higher, I think you need a number over 5.3 or thereabouts. they also include stiffness of joints in morning,

As others have said, ring NRAS, they are fantastic at helping and giving sound advice.

I would like to add here that my later mother wouldn't allow anyone to go to the doctor with her and she wouldn't push for further treatment or a change in treatment. It is very frustrating but I had to accept in the end that it was her decision. A tough one I'm afraid.
best of luck.
reply | back to forum

 

Add your comments to this topic
Subject:
Please type your comment here:

Your name:
email:

3+1=
(This sum is to help prevent automatic spamming through this page - thank-you)


top

Site design: T - Creative Home | News | Personal Stories | Links | Message Board