Recently diagnosed with RA

Sian2345

Hi,

I am new to this site and fairly new to RA!

I started experiencing pains in my shoulders 18 months ago and my Doctor said it may be arthritis and referred me to a consultant on the NHS whose waiting list was 36 weeks. The pain was so bad and no medication prescribed by the doctor so I had no choice but to go private for the diagnosis (this took 1 week).
Started on hydroxychloroquine and struggled for months while it 'kicked in'.
I cannot take anti inflammatory drugs due to other medication so find I am suffering with constant flare ups.
I am a positive, active person seeking some advice/help to deal with my daily battles with RA. There are no specialist nurses I can ring in my area And my 6 monthly visits to the consultant via the NHS do not give me any practical tips to living with this....

Any advice would be appreciated....there are also no local groups for me to join.....!! Aaaaah!

[Deleted User]

Hello and welcome to our forums

What a frustrated time you are having, being a positive person will help you but you still want to be able to talk to someone and this is the place to get that help.

I too had to go private for a diagnosis due t waiting times and it was the best £200 I ever spent.

Members of the forums have experienced a variety of problems and I am positive you will get the support you need and perhaps some answers.

I hope now that the medication has kicked in you are experiencing some relief.

Our help line is a great place to start, the number is in the top right you could also look at this web site it gives us a lot of information
https://www.arthritiscare.org.uk/living-with-arthritis

With love Denise XX

dreamdaisy

Hello, I have psoriatic rather than rheumatoid arthritis but the meds I take are used for both. You mention you cannot take anti-inflammatory medication but no other DMARDs (disease modifying anti-rheumatic drugs) apart from hydroxy. Have these been discussed at all? I ask because hydroxy is one of the lower-entry level medications and it would appear that it isn't bringing things under control, hence the constant flares.

Consultants and other medicos I've met during the course of my arthritic years (all twenty-one of them) are all about theory, not reality; the only person who had a real inkling was a rheumatology nurse who began RA in her late forties. I didn't know anyone in my peer group with similar troubles so when I found the forum I was very pleased, at last I could talk to people who got it because they had it. My peers are now beginning to creak with the natural after-effects of leading physically active lives and they don't like it one bit - who does? DD

Sian2345

dreamdaisy wrote:

Hello, I have psoriatic rather than rheumatoid arthritis but the meds I take are used for both. You mention you cannot take anti-inflammatory medication but no other DMARDs (disease modifying anti-rheumatic drugs) apart from hydroxy. Have these been discussed at all? I ask because hydroxy is one of the lower-entry level medications and it would appear that it isn't bringing things under control, hence the constant flares.

Consultants and other medicos I've met during the course of my arthritic years (all twenty-one of them) are all about theory, not reality; the only person who had a real inkling was a rheumatology nurse who began RA in her late forties. I didn't know anyone in my peer group with similar troubles so when I found the forum I was very pleased, at last I could talk to people who got it because they had it. My peers are now beginning to creak with the natural after-effects of leading physically active lives and they don't like it one bit - who does? DD

Hi, thanks for the reply, it is a relief to talk to people who understand what I am going through. That in itself is a great help as I also do not know anyone else who is going through this and my friends just don't get it! I will speak to my consultant when I next see him about other medication. I have asked before but didn't really get any further, I have been sent for physio???
I think the hardest part is no one has explained the steps that are followed after initial diagnosis and prescribing medication ie. an increase or change in medication, dietary changes, lifestyle changes, in fact anything that would help me to know my options and deal with my condition...does that make sense?

Thanks again

Sian2345

moderator wrote:

Hello and welcome to our forums

What a frustrated time you are having, being a positive person will help you but you still want to be able to talk to someone and this is the place to get that help.

I too had to go private for a diagnosis due t waiting times and it was the best £200 I ever spent.

Members of the forums have experienced a variety of problems and I am positive you will get the support you need and perhaps some answers.

I hope now that the medication has kicked in you are experiencing some relief.

Our help line is a great place to start, the number is in the top right you could also look at this web site it gives us a lot of information
https://www.arthritiscare.org.uk/living-with-arthritis

With love Denise XX

Thank you, I feel a huge sense of relief to have people here who know what I am talking about X

frogmorton

Hi Sian

Are you allowed anti-inflammatory gels?? they might help a little also some find cooling gels helpful as well.

Erm..... I don't now what painkillers you're on but paracetamol used to help me with the fevers associated with flares.

It may be that you need to talk to your GP about pain relief too?

Some also find tens machines helpful.

If I think of anything else I'll pop back

Love

Toni xx

Sian2345

Thank you to everyone who has replied. What a relief to finally find people who know what I am talking about and how I am feeling.
There are lots of questions I have with regards to pain relief but half the battle is not knowing what is out there. I also take warfarin which does not mix well with other medication, natural remedies and lotions. Bit of a nightmare really.
I am fine during the day, I have very little pain and stiffness but boy does this change in the evening and night time. I take paracetamol and sometimes apply a hot water bottle. My social life as you can imagine is not great at night!
I will look in to all the alternatives, it's all worth trying, thanks.
I recently joined a gym to do swimming and yoga ( and the jacuzzi) surely this will also help?
Sorry...so many questions!

dreamdaisy

RA is caused by an over-active immune system, leading the body to attack the joints. The DMARDs and other medications are designed to suppress the immune system thus decreasing disease activity - people sometimes think that boosting their immune system is the way to go but far from it.

Pain relief comes in varying strengths, in my early days paracetamol was adequate but as time and joint damage progressed I had to go onto stronger stuff. Even to this day I keep it to a minimum because the body can adjust to levels and require more and more of whatever just to maintain the status-quo. I also value the pain feedback from my joints, this helps me to judge when to stop an activity and rest.

Our bodies have to work harder as they fight against our various forms of arthritis so naturally, come the evening, we may well be far more tired than our healthy contemporaries. I am in the fortunate position of being retired (I stopped work aged 53 or 54) so that daily drag has gone which is a huge relief. The disease when active causes immense fatigue and it can still have a snap at us despite the meds we may take. Arthritis is a much misunderstood condition but that's not surprising: one of my favourite proverbs is 'Health is the crown on a well man's head but only a sick man can see it.' DD

trepolpen

hi , welcome to the forum

I was positive to rheumatiod factor over 20 years ago , just thought they would come up with some treatment but they can control RA alot better than when I first developed it , are you positive for Rheumatiod Factor , about 70-80% are but dont make much difference .

I cant take the anti-inflammotories because they give me ashma but would be alot better if you could , they will give you DMARD like dd said and at some point maybe one of the Biologics , you need to do everything to protect your joints & hope a proper treatment will come along & your joint are not damaged like mine

hope swimming helps , if not a hydro pool will , as for your NHS doctors , I would try to build close ties to them as you will be seeing them for a long time & your GP cant give you the drugs you will need , my Rheumatiod department has got groups & hydro groups so ask while you are there