If all RA medication is stopped diagnosed a year ago.

[Matilda_1922]

I saw the Rhuematology nurse a week ago. I explained I didn't feel any better than a year ago but worse due to the side effects of medication I'm taking. All they suggested is add another medication which also has its own side effects and very loath to start this one.

I'm already on MXT and hydroxychloroquin and they want to add sulfasalazine.

Before this appointment I was asked to have Fortnightly blood tests which I have had since the end of July. I asked if this can be reduced as it's getting harder for the phlebotomist to obtain any and having a second attempt. At first she said I could have blood tests 2 monthly but changed her mind and said monthly and now back to fortnightly following the decision to add sulfasalazine with no time length. My next appointment is end of June.

I'm at my wits end I don't know what to do so now all I feel like doing is stopping all my medication and get a second opinion. I'm been looking at anything privately but very little option in the area where I live. Unless I travel to London.

I'm also going to try dietary interventions like cutting out sugar from my diet to begin with.

What do you advise

Thank you in advance

Matilda

[Ali_H]

Hi Matilda,

Sorry to here that you are having such a rough time of it.

Can I asked if you had any foot and hand X-rays at diagnosis to check for bone erosion as they would act as a baseline to see what is happening re joint damage. I say this because I would strongly advise relooking at erosion levels before even considering dropping meds - several members here have 3 meds to control their disease activity so please don't balk at that or see it as any kind of 'failure' because it's not - it's what it is for now!

Diet wise I find keeping my gluten down helps as does avoiding tomatoes and potatoes. I also take a lot of flaxseed oil (to help with dry eyes and blepharospasm- ophthalmologist noticed the difference in the level of dry-eyeness when I temporary gave this up thinking I was wasting my time/money so this is now my staple supplement).

I take my meds with fresh natural yoghurt with ginger root chopped into it which seems to help keep the nausea at bay... plus I drink loads of water for the 'med-head' I get the next day!

Rheumatologist recommends VitD3 supplement in the winter months to help.

I've recently had a flare and one thing that is speaking to me right now is the importance of gum and teeth care... I have a finger splint on after snapping a tendon recently and I let my oral care slip a little before the flare - I am connecting the two along with fatigue because the flare started at the end of term (I teach) a week after I started wearing the splint... I am now more proficient at wielding my toothbrush using my other hand! 😎

The bloods are a pig for sure... make sure that you are well wrapped up before hand as being warm will bring your veins closer to the surface and make the process of finding a 'good' vein easier.

Do remember to rest as much as possible at present to help... I dragged out a drawer at a time of stuff and quietly decluttered over the first few weeks of resting as doing nothing doesn't sit well with me - it felt really good and our house is so much 'freer' for it.😎

I hope there is some useful info in the above ramble and wish you all the best for the coming year (and beyond) ... 'May the worse day of your life already be behind you!'

Ali

[Eiram50 in reply to Ali_H]

Sorry to hear you are feeling so bad and despondent about your meds Matilda however, Ali has offered some good advice. It's a process we go through, trying to find the meds that are right for us - everyone is impacted in so many different ways. I do wish you the best in the getting there.

Ali_H - I love what you said

'May the worse day of your life already be behind you!'

Fantastic .

Wishing you all a very happy new year

Marie

[Matilda_1922]

I had X-ray just after symptoms started in June 2015 by GP and a MRI in December by an orthopaedic specialist as the first thought I had carpal tunnel. The MRI showed inflammation synovitis in wrists and referred me to a Rhuematology specialist who saw me in January and they confirmed RA. They started MXT and had steroids into my wrists and buttock. My hands didn't appear swollen just had pain in both wrists and some finger joints.

In march US confirmed I still had active disease. I haven't had any further tests since March as my appointments were cancelled quite a lot so my last face to face was at the beginning of May until last week when they added Hydroxychloroquin. Had a telephone conversation with consultant at end of June as I felt unwell with side effects and changed MXT to injections but still experience side effects. Need to take an anti sickness

Matilda

[medway-lady]

Its a long road with RA but worth remembering that blood doesn't have to be taken from the elbow. I have awful problems and its usually back of the hand. I always drink a lot before the test and apply a cheap £1 heat pack 20 mins before a test. Only 2 attempts ?? thats not bad I've had 7 in 1 day and superficial thrombosis in the elbows as well but I stress that its just bad luck and mobile veins. I now go to the local A&E with a pass to avoid GP's tests. So do not worry these things can be sorted out. Just stay strong and optimistic thatnthe new medication may make a huge difference. xx

[Simba1992]

If you are thinking about dietary modifications I recommend that besides sugar leave out gluten and dairy. This i usually the first step since these foods are thought as main culprits in inflammation triggering. Usually you can see a difference in 3-4weeks. If you are interested to learn more about diets that have helped with AI diseases I recommend Dr. Terry Wahls protocol and Dr. Sarah Ballentyns AIP diet. Good luck

[helixhelix]

I'm on that triple therapy of MTX, hydroxy &a sulpha and have been for 6 years now without problem. It's done well for me as I'm generally in remission now. And because I have few side effects I only have blood tests every three months now. So it can work well.

But if the combination isn't doing it for you then there are other choices. Sometimes you do have to push a bit to get people's attention, as often they'll take the easy option. There's a standard pathway of trying x, then y, then z etc etc. So if you want to skip a step you might have to jump up and down and make it obvious that you aren't happy and want different solutions.

It's also good to try dietary changes. i have tried the whole range, which did absolutely zilch for the RA but did have an effect on diminishing the side effects from the medicine completely. So now I have settled on a balance of food that works for me.

But do think hard before stopping everything without an alternative as much harder to get it under control then.

[nomoreheels]

From personal experience please, please don't stop your meds Matilda. I had no option because I had a delayed appointment when returning to the UK from abroad so it wasn't a decision I made but the 3 months without my meds were the worst 3 months & I was very well controlled at that time. I flared terribly, inflammation in every joint, had to have my wedding ring cut off because it was so tight my finger was turning blue & I just felt dreadful. I'd seek a second opinion if you work on that but stay on your meds until told otherwise by a Rheumy, please!

Double or even triple therapy (2 or 3 DMARDs taken concurrently) isn't unusual & many people do well for a long time on their mix so don't think it's unusual or that you'll have horrible side effects from any new one considered by your Rheumy. I've been on double therapy MTX & HCQ, it didn't work for me either but once the HCQ was stopped the MTX romped away. Save for a blip when my liver decided no & I changed to injections & a reduction in dose I remained good on it for about 5 years as my only DMARD. It's only been the last few years I've had to try SSZ & now leflunomide because of 2 years of ignored disease activity in my feet.

Try cutting out things from your diet, sugar, dairy, whatever you feel may help, you can only see but I'd been on a recommended 'diet' for over 15 years when I was without my meds. Even though I felt at the time it helped zilch maybe in hindsight I'd have been ever worse than I was, though it's difficult thinking back that I could have been worse!

I find it odd your Rheumy wants you to have fortnightly blood tests for so long, it's no wonder your phlebotomist struggles, your poor arms, & veins. I only have them for 6-8 weeks once I start a new DMARD, new drug monitoring, in fact just about to go back to monthly monitoring after starting LEF (I'm also still on MTX).

I hope you can find a way round this, start the new year off better, that would be good.

[Rocky07]

Hi matilda I think I know what your going through I am from australia I have had pyscological issues due to concerns about side effects to medications so I tend to refuse them which I suppose is not always a good thing as I am not in a good way at the moment but the doctorz dont seem to understand how you feel and sometimes I. think they think your not listening to them they try so many different medications its scary I don't know if you have seen my post but I have been looking into low dose naltrexone I will be mentioning this at my next appointment there is very little side effects please do your research

[Maggiemae58]

Matilda if you have a chance listen to some of Clint Paddisons findings with reversing RA with diet. Google his name and different sights will pop up.