Medication Struggles

ZoeNimmo

Hi, I am new here. I am 33 and have been diagnosed with seronegative RA. It all started in August 2023 with what was a suspected knee issue and very quickly spread around most of my joints. I started methotrexate in Sept 2023 but on its own it didn't work. I have now been put on Sulfasalazine but that also doesn't appear to be working. I was on a 6 week decreasing steroid course and while I was on the higher doses, it was great but as I dropped and then finished the course, I have swelled up on loads of my joints again and back in horrific pain.

My workplace thankfully have been brilliant and I work from home 4 of 5 days a week but I am sick of being in pain. On top of this I am exhausted and suffering with awful headaches. My consultant has mentioned biologics to me. What does this entail? Is it a lot of injections like I have read? I like to be prepared for what is to come. I have been referred for screenings but haven't had them yet.

Thanks for any info.

Zoe

CarylW

Hello @ZoeNimmo and welcome to our online forum. We are a friendly group and try and help each other with information and support, I am sure you will soon get some response to your post.

You will find our website has a lot of information on treatments and drugs, so do explore it! I am posting a couple of links which may be a good starting place for you.

https://www.versusarthritis.org/research/research-achievements/anti-tnf-the-inflammatory-arthritis-treatment-revolution/

https://www.versusarthritis.org/about-arthritis/treatments/drugs/sulfasalazine/

Do let us know how you are getting on, and keep posting if you have more questions.

Best wishes

Caryl

jamieA

Hi @ZoeNimmo

I'm a lot older than you but in October 2020 at the age of 65 I was diagnosed with inflammatory arthritis - psoriatic arthritis in my case - after my left knee swelled in September 2020. I was first put on sulfasalazine and that didn't work. MTX was added 4 months later and the combination of the two didn't work. Nine months after initial diagnosis the biologic adalimumab was added - it was actually a biosimilar called Amgevita. It's an anti-TNF alpha treatment so supresses the anti-TNF alpha protein in my blood. This is a self injection every 2 weeks using what looks like an epipen - an auto injector. So I now take all 3 and my rheumatologist describes the way they work together as synergistic - the sum of the 3 is greater than each individual drug. I know we are all different in how we react to drugs but in my case the addition of the biologic was very significant. By the time the biologic was prescribed I could only walk with the aid of two elbow crutches, couldn't close my hands or move my shoulders much - two months after my first injection I was able to hand back my crutches. I'm now able to walk my dog 50-60kms a week - albeit with a limp as my left knee deteriorated in that first year before the biologic was introduced and now needs replaced.

The testing before I was put on Amgevita entailed a significant number of blood tests - I think there were 8-10 vials of blood taken. They test to ensure you don't have tuberculosis, hepatitis or liver issues. The protocol at the time required that 3 joints had to be shown to be swollen - I think it's called the DAS test - Disease Activity Score. The rheumatology nurse used an ultrasound scanner to check my joints. She also checked any other medication I was on in case it was incompatible.

I don't know if your rheumatologist has explained but being on MTX and/or a biologic means you'll have a compromised immune system - so you'll need be a bit more careful of contracting infection.

I hope you get something that works for you soon.

mosborn11

Hi Zoe - potentially off topic, but I'm in the process of being diagnosed with seronegative RA. I'd be interested to hear your experience with this because my consultant keeps saying that I don't need a diagnosis and it doesn't matter. But for me, knowing what's wrong with me would be really helpful! Did you have any markers in your blood that suggested RA?

ZoeNimmo

Hi @mosborn11 yes my CRP levels were extremely high. They are supposed to be below 8 but mine was 144. That got me instantly put under the care of a consultant and all of a sudden I went from nothing to tablets coming out of my ears 😂 I'm surprised they are saying you don't need a diagnosis. Without it, how will they know what to treat? Hope you get some answers soon!

ZoeNimmo

Hi @jamieA

Thank you for your reply. Sounds like an intense process but this whole thing has been for me so whats the difference 😂

Yes, I was made aware that I now have a compromised immune system, I am being careful when near ill people. I'm glad the biologics were good for you, sounds awful how bad it got. I definitely have the multiple swollen joints, knees, elbows, ankles, wrists and recently my back and shoulders have been struggling too. It's awful. I can't straighten my left arm and haven't been able to for a long time now. Hopefully I get my screening soon as it definitely doesnt seem like mtx and sulfasalazine together is working. 🤞

Woofy

https://community.versusarthritis.org/discussion/62249/medication-struggles

Hi Zoe.

reading your post is exactly where I am right now.

I started Methotrexate May 2023, at the same time as being on a high dose of steroids until the methotrexate kicked in.

reducing each month. I took my last steroid tablet a few days before Christmas, and since then the old pain has returned.

like you I have been told other things can be added, along side mex. I have already tried Hydroxychloraquine, and sulphasalazine with poor results. I am only on 17.5 mg of methotrexate at the moment.

I just want this pain to be under control, it’s been almost 3 years. I have an appointment on Wednesday at the hospital, so I will see what happens next. I’ll keep you posted.

jamieA

Hi @ZoeNimmo

I was on a course of oral prednisolone steroid for about 4 months at the start of it all which really helped but the medics wanted me off it due to the possible side effects. They then started injections of Kenalog steroid directly into the worst affected joints - my left knee and right shoulder. As more joints got worse they then gave me a general Kenalog steroid injection into my rump. Those helped all my affected joints for about 4-6 weeks at a time and were repeated. When the adalimumab kicked in I didn't need steroid injections - though they have started giving me one now irregularly as a correction when things start drifting. Maybe you could ask for steroid injections until you get stable?

If there's one piece of advice I'd give from my experience it's don't be a passenger and assume the medics are aware of how difficult things are for you. I hadn't suffered from a chronic issue before and just assumed everything would kick in to help me. I quickly discovered I needed to be more assertive in my dealings with both my GP and rheumatologist. Also if you've been given access to your rheumatology clinic helpline use it - don't leave yourself in pain. I found it easier to get access to the rheumatology nurses via the helpline than the consultant and they then approached the consultant to agree a course of help - whether it was more painkillers or further steroid injections. I was also referred to a pain management clinic, occupational therapist, rheumatology physio and rheumatology podiatrist. I don't think any of those referrals would have happened if I hadn't spoke up and been a bit more demanding.

Hope you get help soon.

ZoeNimmo

Hi @Woofy

I am on 25mg of MTX at the moment and the highest dose of sulfasalazine. Hope your appointment goes well. I am also there on Friday.

Hi @jamieA, I have had multiple steroid injections both general and direct and they only gave me relief for about 2 weeks so consultant didn't want to keep giving me them which is why I got given the 6 week course while the sulfasalazine kicked in. But now I'm back to where I was before 😞 I have my consultants assistants number but she is a nightmare to get hold of and only works part time. When she's off, I get told to ring back when she's working. I will definitely be telling them on Friday when I am there just how I'm feeling as I am so fed up. @Jamie

jamieA

Hi @ZoeNimmo

My first rheumatology consultant wasn't helpful and was arrogant and dismissive. By my 3rd appointment with him - 8 months after diagnosis - I'd resolved to request to be moved to another consultant. In those 8 months I'd been hospitalised 6 times with PsA/pneumonia/heart issues and since my local admissions hospital is a different one to my rheumatology hospital I'd been seen by probably 10 different rheumatologists when an inpatient. Some were just as arrogant and unhelpful but some were very good and understanding. In advance of my 3rd appointment I wrote out a detailed letter of my treatment and poor outcome of it under my first rheumatologist - I was getting worse not better. I ended the letter with a statement that if he wasn't prepared to help me I wanted to be moved to a different rheumatologist. I handed it to his junior doctor who I saw first at that appointment who then went off and gave it to him and he arrived a few minutes later. That meeting was uncomfortable - he was arrogant and over bearing but I didn't retract my request. He started barking out instruction to his junior to get me appointments with occupational therapy, podiatry and pain management. I later found out he had instructed his staff to move me onto biologics - though he didn't tell me that at the time. I only found out about the biologics at a clinic appointment he hastily arranged for 10 days later when I asked the nurse why she was preparing to take all these vials of blood from me.

I did move and my first appointment with my new consultant was 8 months later. It has been a significantly better experience - far more empathetic and positive. That's continued 2 years on. I told my consultant that and she said they were trying to move away from the way the older consultants did things. She actually used the term fuddy-duddy to describe them.

I realise we are all different and the NHS facilities vary by location so changing rheumatologist may not be an option or something you want to do. But if it is and you are not getting the treatment you need put the request in writing.

Hope you get progress on Friday.

Stantonrose

Fife, Scotland

Hi All, I am 65yrs and have had seropositive RA for 27yrs, I have had reconstruction surgery on my right foot due to extreme pain and deformity, 2yrs ago I had a shoulder replacement, I have had around 6 rheumatologists, who all have their own way of treating RA, some have been patronising, some arrogant.

RA made me feel vulnerable, tearful and anxious, where I just could not phone any rheumalology services, as my blood test did not show inflamation, my joints were not hot and swollen, therefore I was unable to get passed rheuumatolgy nurses, who would say even if we were to see you we would not be able to treat with steroid injection.

It did not seem to matter that I could not wipe myself at the toilet, brush my teeth, get dressed as I was in excruciating pain and exhausted. I had not seen a rheumatologist for over 4yrs, during that time had my shoulder replaced, also during that time I was having flare ups in my wrists, thumbs again stopping me doing everyday things.

It all got too much in October last year, so I thought let's play their game, I have now learned that the only way to get anywhere is to be assertive, not to be put of with 'if you don't have those symptoms there's nothing we can do' 'there are no inflammation markers in your blood so it highly unlikely your having a flare up'

I have been one methotrexate, sulphasalazine, leufludimide, hydroxychorquine, all had side effects that I could not tolerate, 3yrs ago I started biologics, Benepali, for the first 18month I thought oh is this the one, but I started having regular major flare ups, leaving me in excruciating pain and unable to every day tasks. Last October 2023, I started to be proactive in my communication with rheumatology, it has been a very slow process to get to where I am, the rheumatologist want me to try another biologic Rituximab, it is an intravenous infusion, but having come across another biologic Abatacept in the Lancet, where studies have been done, where findings indicate it can prevent damage to the body, or if diagnosed early May prevent the on set of RA I will be asking for that.

Sorry for such a long post, but I have just discovered all you lovely, kind people here and I am grateful, reading your journeys has given me strength!

Woofy

https://community.versusarthritis.org/discussion/comment/719602#Comment_719602

Hi Zoe.

had my appointment today. They have upped my Methotrexate to 19.5 mg as from tomorrow. Taken bloods, and I have follow up in three months. They said if the increase dose doesn’t help, I will probably go on biologicals.

good luck for Friday.

ZoeNimmo

Hi @jamieA and @Stantonrose

I am so sorry to hear youve had bad experiences with consultants. Thankfully mine seems really proactive and is really nice. Sounds like I have a rare good one.

RA is exhausting and draining. Being in pain all the time is frustrating. Glad you are on better paths now.

We will all get there. One day x