decisions, decisions, help !!!

[Wonderfullifeandmore]

Hi, I haven’t posted for a long time. I have inflammatory arthritis for a year now. Had my first appointment with an NHS rheumatologist last week, he gave me a form to take to get my bloods done with lots of boxes ticked. He also requested that I have an MRI scan of my cervical spine, He has given me two booklets to read with a view to starting another drug, I already take Hydroxychloroquine, the drugs are Mycophenolate and Azathioprine I have read these booklets over and over and the side effects frighten me. Does anybody on here take or have taken either of these drugs? If so can you tell me how they did or didn’t work for you

[Amnesiac3637]

Firstly, all drugs have side effects, even Paracetamol, and most people don’t get even one of the ones listed. If they do, they’re usually transitory and once your body gets used to the drug they fade. If they don’t and you can’t tolerate them then you stop that drug and try another because it’s not compulsory to stay on it for life.

All manufacturers have to list all side effects even if only one person has ever had one due to the prevailing ‘don’t sue me’ culture. If the leaflet states one in ten people get blah, nine don’t!

You have to weigh up the benefits versus the risks for you and if your consultant thinks the drugs would be right for your particular disease circumstance then that’s who you should take notice of after a discussion with him or her. Lots of people will have been on these medications but we’re all different and what suits one may make someone else ill so asking who has been on what may not give you the answers you want.

A great source of information is the NRAS helpline who give unbiased, sound advice and comfort if needed so they’re well worth talking to.

I hope you do well on whatever drugs you take. All best.

[Wonderfullifeandmore in reply to Amnesiac3637]

Thank you so much for your sound advice, in my heart I know what I should do. I am having more and more symptoms cropping up and the rheumatologist told me my RF had increased. I am so scared of everything to do with RA. It has affected my mental health greatly,

[Amnesiac3637 in reply to Wonderfullifeandmore]

Everybody on here would sympathise with the way you feel about RA - it’s a disease which may not kill you but it does change your life and it’s really hard to come to terms with.

But, be glad you’re not being treated years ago when the drugs we’ve got available to us now were not even a twinkle in a manufacturer’s eye and they were heavy-duty beasts which often knocked the stuffing out of you. I know as I was treated 34 years ago by a variety of nasties which caused all sorts of unwanted problems.

The drugs we have today are targeted, much less likely to cause you any major side effects, there are many of them to choose from and more coming along yearly it seems. My rheumatologist, whom I’ve known for donkeys, said they very often only tweak drug doses these days and don’t seethe horrendous deformities apparent when untreated RA was very apparent in the past.

Get as much help as you can from family and friends, tell people if you can’t cope and accept any offers of assistance whenever. Stress is a no no and makes RA worse so try to stay on an even keel. Once you’re on the right drug regime you’ll find life much easier - it takes time (and some screaming) but you’ll get there!

[Wonderfullifeandmore]

Thank you so much Amnesiac3637 such sound heartfelt advice. You have made me feel much better.

[Fruitandnutcase]

‘My rheumatologist, whom I’ve known for donkeys, said they very often only tweak drug doses these days and don’t seethe horrendous deformities apparent when untreated RA was very apparent in the past.’

Interesting you should say that Amnesiac - when I was first diagnosed I said to the GP I saw ‘but my hands look quite normal’ and he said if you treat RA correctly right from the start there is no need for your hands to get deformed.

[Amnesiac3637 in reply to Fruitandnutcase]

So true! Which is why people should be referred immediately to a rheumatology team when their inflammatory markers are raised and RA and its ilk is suspected. I think that happens much more frequently now. When I was Practice nursing some years ago a lot weren’t and the problems are apparent today.

[Wonderfullifeandmore in reply to Amnesiac3637]

I was on the waiting list to see a rheumatologist for a full year. Saw a private one so that I could get a firm diagnosis and hydroxychloroquine was my choice of drug. I got to see the nhs one last week for the first time.

[Cat-E in reply to Wonderfullifeandmore]

That's terrible, it must be such a postcode lottery 😞 I was seen within 2 weeks of my GP referring me on my hospitals fast stream initial appointment. I was prepared to go private though as I was in so much pain but was amazed at the speed of the NHS. One of the first things that was said to me as I sat sobbing in the consultants room was don't worry, we do not get the deformities of the past nowadays as treatments are so much better and there are so many of them.

[arvine in reply to Fruitandnutcase]

And what would the right treatment for RA be? Currently I am down yo 4 mgs of prednisone from 40 , been n for over 7 years

[Wonderfullifeandmore in reply to arvine]

Hi Arvine. I think there are many different treatments out there.

[Fruitandnutcase in reply to arvine]

I don’t know, probably depends on a lot of things. I started on a three month decreasing course of prednisone (which also caused steroid induced T2 diabetes!) and as that tapered off I started on hydroxychloroquine- i was told if I need to I could top up with paracetamol. That works for me but I know my treatment wouldn’t work for everyone

[AgedCrone in reply to arvine]

Aren’t you on anything else except Pred? If not…do have a word with your rheumy to get some advice on some other meds for your condition.

[arvine in reply to Fruitandnutcase]

hands painful especially first thing in am but tested RA negative

[arvine in reply to arvine]

And why some mornings worse then others?

[Wonderfullifeandmore in reply to arvine]

Yes I know, it’s a mystery.

[arvine in reply to Wonderfullifeandmore]

Well appt uestrrday eith rheumy, thimks hand pain osteo, sendimg me for hand exray

[KittyJ in reply to arvine]

Lots of things can affect the pain, what you did the day before, stress, the weather and inactivity, you do learn what affects you badly but that doesn’t necessarily mean you take heed 😕

[Fruitandnutcase in reply to arvine]

Yes, I am sero negative. My hands were probably painful all day but I’m very stiff in the morning even with hydroxychloroquine.

[Happy5]

Amnesiac3637 has given comprehensive suggestions my only addition is write all your questions down and ask to discuss your concerns with the RA specialist nurse too Doctors diagnose and prescribe while the RA nurses look after your care (plan) so have a wealth or knowledge about the concerns you have. All the best.

[Wonderfullifeandmore in reply to Happy5]

Thank you Happy5 during my visit the rheumatologist just said to contact his secretary if I decide on either of the medicines he never mentioned a nurse at all. So I don’t know if there is anyone I can discuss it with.