What next? RA

[Srf8]

I am newly diagnosed with zero negative rheumatoid arthritis. So far I have had bad reactions to methotrexate and sulphasalazine. The consultant has said the next options are leflunomide or a biologic. He said there is probably not much point trying leflunomide given my reaction to the other 2. Has anyone been in this situation. It is quite stressful wondering what next. I also have an under active thyroid so I am also wondering how much of the joint pain is related to that and how much is RA. Stress and thyroid don't mix well so I am shattered from that and finding it hard going researching anything online. any advice or experiences would be great. Thanks Sarah

[Simba1992]

Are you on thyroid medication? When did you have your latest hyroid pane.. I think you do right in getting your thyroid situation balanced. Many symptoms same as in RA. Have understood that mtx also decreases thyroid function.

[Srf8 in reply to Simba1992]

I am on t3 and have been stable for 20 years with the exception of a couple of stressful times. I have been avoiding thyroid consultant as I don't want anyone to change my t3 prescription. I felt like I had been hit by a bus on mtx very sick too. Under active thyroid would have been difficult to spot. I have got 2 weeks before my next appointment so I will focus on my thyroid a bit more until then. Taking b vitamins and magnesium and selenium always helps me. I need to find my thyroid book. I had been well for so long I have forgotten it all.

[Simba1992 in reply to Srf8]

There is a really good thyroid forum here on HU. They are very knowledgeable and helpful. It may be that you will have to up your T3. You can go privatly to do the panel and have the forum help you with the results. They really know what they are talking about both the admins and many forum members. Many in you situation where help from endos all too often is not forthcomming. Have a look😊Good luck xxSimba

[Srf8 in reply to Simba1992]

Thanks

[PFKAAde]

I have sero -ve RA, couldn’t tolerate side effects of MTX , had serious adverse reactions to sulfasalazine and cyclosporine, leflunomide and hydroxychloroquine did nothing so I ended up being given infliximab - which worked well until I developed antibodies and had an allergic reaction.

After that I was given enbrel which didn’t work and after that Humira, which has kept me in remission for about 8 years now.

It is stressful trying to find something that works, but you still have a few more options and the fact that the consultant is talking about biologics is promising as it opens the door to several other options.

Can’t really comment on the thyroid issues as I’ve not had that particular problem.

Don’t give up, you’ve still got plenty of things to try and your consultant sounds like they are prepared to try them.

Good luck!

[Srf8 in reply to PFKAAde]

Thank you

[summer32 in reply to PFKAAde]

Having similar problem with reactions haven't beenallowed biologics just changed consultant

[Mandy8175]

It is very hard to be patient when you feel so crappy, but the right treatment will come along! It is a lot like roulette, once you find the right med combo it is like winning a million bucks!

Glad you are here with us for support, but sorry you have this horrible disease!

[Jesnaskah]

I'm sorry to hear you are having such a hard time... Most here can tell you it's a lot of trial and error.

These meds have ppl experiencing all kinds of side effects and undesirable symptoms... But there are a lot who have also actually been helped and didn't have the horrible side effects!!

Remember, this is your body and you get to make the ultimate decision. Sometimes I feel like our doctors can be very pushy... And when they are not sensitive to what we are feeling, it's not right to feel pressured into a new med or treatment. You still have 2 more dmards that I know of to try... Hydroxychloroquine and leflunomide. Biologics, from what I've heard are more intense and will suppress immunity even more.

I've been through 2 dmards. Now trying the hydroxychloroquine (plaquenil). Don't give up. Don't feel pressured either. Do what you feel comfortable with. Wishing you the best!!!!

[messylou]

I went down the same route as you. I am now on abatacept injections weekly and they work really well for me

[LeeJayne in reply to messylou]

I've just been diagnosed with "super-early" RA. Not on meds yet but consultant suggests joining APIPPRA trial for Abatacept as a possible preventative against developing RA. Theory is a year of weekly injections can stop RA. I'm trying to manage by alternative methods including diet which minimizes leaky gut and using minerals. I'm a big fan of Dr Carolyn Dean's protocol and use her ReMag (magnesium), ReMyte, ReCalcia and ReAline products which have reduced chronic migraine attacks down from 12-15 per month to about 2 per month over the last 8 months. Theory behind her products is that they re-balance the body and help it to heal itself. Am really nervous about taking Abatacept and side effects, having built up my health and wellbeing so carefully during last 8 months.

[Jetxav]

Hi Sarah I know that feeling too. I had steroids in huge doses from 2005 to treat another (very rare) auto immune disease, plus azathioprine and various steroid injections directly into neck, elbow, shoulder, knee and hips in between - all of which were short lived. Once seroneg RA was diagnosed, as the doses of steroids were lessened (they said steroids had masked it before) the journey of different drugs began and, like you, I had reactions to almost all of them, even a caudal injection into the spine for my back problem. The next step was to try biologics, so I had a few courses of Rituximab drips, which didn't help at all and also caused quite a reaction, so that was stopped. I was informed, given the fact that my immune system by now is so low I catch every bug going around, I would be placed on Mycophenolate, with a possibility of going on Abatacept at some stage. A lot of these stronger drugs also have a side effect of skin cancer and indeed I did get Basal cell carcinoma, so that in turn limits what medication can be used.

I don't want to paint a pessimistic picture and your experience may prove totally different, but I thought it might help to hear my experiences. Will try to keep up with what happens next with you! Good luck.

[Srf8 in reply to Jetxav]

I think at the moment the pain is way less than the awful side effects. I am thinking about maybe waiting a month or two before I try the next one. I am feeling so wiped out. I feel like I need to be feeling stronger first

[Simba1992 in reply to Jetxav]

So sorry to hear of your suffering. Unfortunately this is the route for many. There are a lot of drugs to try out but all of them affect your normal immune system that is already weakend by the disease. If the inflammation cannot be controlled by the meds and the only effect is a slow weakening of your possibilities to fight pathological intruders, then the only way out of this dilemma would seem to be to strengthen your normal immune system in every possible way and this is where getting your gut into shape, removing the possible common allergens, getting right nutrition, checking possible underlying metabolic dysfunctions and vitamine and mineral deficiencies,Unfortunately many in your situation, when meds are not working are only offered steroids. We all know this is the worst possible option in this situation.

[Jinnybabs]

Hi Sarah, I was in exactly your situation; diagnosed with RA last January. Methotrexate had a really bad effect on my liver, making me feel really unwell, and Sulfasalazine was even worse. Leflunamide made my BP dangerously high, so I've been 9 months with no treatment, virtually. My consultant decided that the only option was Biologics, and I started Benepali 3 weeks ago. I had reservations because reading the potential side effects is quite scary, but I felt I was between a rock and a hard place, and after 3 weeks I am beginning to feel better. My hands are not so swollen and painful, and my fatigue is lessening. It can all be so worrisome, I hope you get some decisions soon.

[KMC15 in reply to Jinnybabs]

I am exactly the same path as you. So now on week 2 of benepali (biological injections). Slight improvement in my pain already. But still very fatigued. Just worried this will affect my PIP. Guess i will gave to inform dwp & then lose what little i get. And prob have go thru the stress of the assessment etc again.

[Mandalou]

Hi Sarah

My pathway matches yours regards the drugs and your experiences too. I also had years of underactive thyroid which righted itself once my inflammation was sorted out.

After a hellish six months following diagnosis I was put onto Enbrel which together with Hydroxychloroquine got me on the path to remission.

I was swapped onto the Biosimilar Benepali which has worked just as well and I am quite stable. Not pain free but certainly with no active inflammation.

Good luck with what comes next.

Mx

[Srf8 in reply to Mandalou]

Thanks for your help. How do you know whether the joint pain is arthritis or thyroid related. My pain went up after taking mtx but someone told me that can affect the thyroid so the pain might be either. The original pain was mostly in my foot with changeable pain elsewhere. No where near as much as now. I am also wiped out doing small things but that could be thyroid too. It is a bit of a leap of faith for me that the drs know what they are doing. Thyroid doctors are mostly terrible, relying solely on blood tests rather than the patient.

[oldtimer]

Have a look on the treatment page of the NRAS website- that sets out the good and not-so-good aspects of the various treatments without the hype and horror.

It often takes some time to find a suitable treatment unfortunately.

[Srf8 in reply to oldtimer]

Thanks. I will

[Sjhoney]

Hi, I’ve also had bad reactions to methotrexate and sulfasalazine and am wondering what happens now! I won’t see my rheumatologist til the end of Nov so I’m on steroids and naproxen til then. This disease really messes your life up, to begin with at least 😳

[Gillian1163]

I have been on 2 biologics and suffered no side effects with either compared with the dmards. Effective too

[Srf8 in reply to Gillian1163]

That is so nice to hear

[dryan]

for Sarah, given fact you are having reactions to meds. I think you should look into alternative treatments. I did so at a very well know center in New York City with good results. While there is no cure for autoimmune problems (particularly RA), I think its important to explore your situation and see if non-toxic treatments may help. Everyone is different and side effects to biologics, etc. are a problem. The immune system is a mystery and there is no correct way to go. Nutritional medicine may help. Good luck.

[Kai--]

.

Kindly consider thoughts shared at, 'RA Newbie Introduction', Srf8: healthunlocked.com/nras/pos... 🙏 🍀 🌺 🌞

.