Any advice? -First post!

[Samantha01]

I was diagnosed with rheumatoid arthritis associated with Crohn's disease this past October (2016). Symptoms included constant swelling of fingers, wrists, toes, ankles; constant joint pain. At first, the treatment was to reduce the weeks of my infusion of remicade. Going from 8 weeks to 7 weeks. Then in late December, I started taking methotrexate (orally) 12 mg. After constant sore throats I started using the injection pens of methotrexate late February. After almost 4 months of the 12 mg methotrexate AND still receiving remicade, I was still having all the same symptoms and no sign of relief. I then was bumped up to the 20 mg of methotrexate and went down to every 6 weeks of remicade, and had little to none relief. I am now at 25 mg of methotrexate and still at 6 weeks of remicade. I feel as if the methotrexate is not working at all. Once or twice a week I will have to take a 5 mg prednisone just to find some relief with pain. Anyone have any advice on another treatment plan? I see my doctor at the end of the month to discuss this further; but I wanted to try out this site... something different!

[lala1958]

Hi I'm not sure if my advice can help but I have had RA since 2010 and been on most biologics and methotrexate, steroid injections, prednisone bwith low results. I also have fibromyalgia and sjrogens as well.

I am very sensitive to the drugs so lots of reactions etc. I started Rituxan one year ago I get 2x every 6 months and slow results as well with that biologic. I am at my last one so it has to work. I have faith it will and if not then another drug will come on the market.

So in the meantime I take Tylenol 4's and anti inflammatories, I go to the pool and swim as it hurts to walk. I also do yin yoga which helps my mind cope with the pain and all the other feelings associated with chronic pain.

I have cut out most carbs from my diet and weaned off most red meat and try to eat chicken and fish with vegetables. Still sneak my sugar in but nothing g like I used to. I also quit smoking 2 years ago. Now I am on a mission to lose 50 lbs as I know the weight is not good for me. The only way I can cope is to take charge so I feel like I have control of it and then I do not feel as helpless.

I was on the couch for years and still lay on the couch a lot but now I give myself permission to rest my body and not feel guilty for being sick or in pain. My mindset about caring for myself has changed so now I am taking care of me as I don't want to be in a wheelchair so I keep moving and trick my brain. Keep trying everything and keep your faith and it will work out. Good luck on your journey, Hope that helps. 🙏

[Entero in reply to lala1958]

Hi Lala, I also have Crohn's related arthritis ( or Enteropathic arthritis for those in the club) and coincidentally was diagnosed around the same time as you. My consultant explained that it comes in two forms- coinciding with Crohn's flare or flaring independently and I have the latter. My Crohn's is "interesting" in that it lies dormant for long periods of time and then is severe when it flares. I haven't had a flare for over a year and so was on only azathioprine and mesalazine when the arthritis hit - I tell you all this so you can make comparisons. Ive been with my gastro for 11 years and didn't want to see a Rheumatologist so gastro started me on oral mesalazine in August and things got gradually worse, until I ended up on opiate patches. I eventually caved and saw a Rheumatologist in January. Since then I've had an injection of steroids twice, which has helped me fantastically and take 15mg of Mtx sub which I was told could take months to kick in. I'm still on 800 mg daily mesalazine.

I haven't eaten gluten for 20 years and hence also have little sugar plus I do pilates or yoga and meditate most days. Both consultants think this is how I've managed to stave off the worst for as long as I have. I don't feel fantastic (decreased energy, pain in the early hours etc) but I'm eons better than I was back in December and can't imagine how low you must be feeling that you're not. Do keep at it though. This site has been a brilliant resource for me and whilst each of our cases is unique we all get what it is to live with a chronic illness. Take care, E.

[lala1958 in reply to Entero]

Hi Entero

Thanks for your response. I’m usually not on here consistently so if I’m tardy I apologize.

I used to beat myself up all the time thinking I created this invisible disease, and living with a husband , 69 and 9 years older that does ballet around me and energetic was frustrating really frustrating and then the Weight gain again beating myself up about that the Actemra and the Rituxin and the Zeljang all made me gain weight My cholesterol went sky high with the Rituxan but apparently RA causes higher cholesterol I did not know that I made an appointment with a heart specialist just to get a baseline on my heart as the chronic inflammation also affects the organs so he did his ultrasound and put me in Crestor my heart was perfect which was nice news but 2 days into the crestor my legs were in sharp pain mode from my hips to my feet not my normal pain from RA I cut the pills in half thinking that would help every 2 days instead half a tablet nope same reaction so I stopped taking the Crestor I the meantime I go to a workshop at a pain clinic a a renowned hospital here and the doctor puts me on nabilone so I can sleep better for the fibromyalgia and the RA

I sleep better but I gain 10 lbs in a month I search Dr Google and wow weight gain with the Nabilone (synthetic marijuana) prescription and pill form

I stop that so frustrated with all of this then they say why don’t you try cymbalta for the neuropothy you have in your feet I said ok Doc said and by the way you will lose weight with this drug I said count me in I’m excited Day one drowsy and definitely not hungry day 2 drowsy and can’t leave the couch can’t think can’t eat and staring into space and cannot urinate at all so third day I said screw this and all of these drugs no Nabilonr, no Crestor, no cymbalta , nothing except the Rituxan and the Tylenol 4’s for pain

I found a herb called Resveratrol when I was looking for a natural alternative to the Crestor Resveratrol apparently helps cholesterol , weight control, heart health and other things anti oxidant etc.

I have had a decrease in brain fog as well so I only take that with omega 3

I swear by this stuff and won’t continue to have reactions to the prescription drugs that want to give me

I actually started to go to a therapist recently as well that deals with somatic healing. That is basically when someone me of course shoves all their feelings and stress and trauma inside their body and then the body boils over with emotion and trauma. So lots of trauma in my younger years and I figure it can’t hurt. If I can release some of that emotion maybe the cellular memory will be better. I’m not sure but I will try anything.

So old shoulder injury stops me front doing front crawl so now 20 minutes marching in water at local pool 4x week

Apparently fat burning. 2 minutes hard walk for 1 minute slow walk repeat 7 times. Apparently study in UK says fat burning up to 24 hours after this. I keep positive and look for anything that will help me with this disease. I will keep you posted. Cheers 😇

[Nettac]

Hello Samantha and welcome!

So sorry that you are having such an awful time. Sounds to me that the meds might be making things worse for you. I had similar issues when I was taking sulfasalazine.

At the moment I'm doing very much the same as the Lala, until I see my rheumatologist again in December.

I have noticed (with me) that grains are a huge issue for me. I have eliminated them from my diet completely. It hasn't altered the disease (as far as I'm aware) but I'm not in such agony. I don't feel so tired. This means I can walk and swim more.

I think folks with autoimmune diseases may have a tendency towards food intolerences.

It might be worth keeping a food diary to see if there's anything makes the pain worse? At least until you see doc.

I go swimming with a group of friends, go walking with dog, and some meditation. It helps.

I do hope things get sorted for you soon on medication front.

[helixhelix]

Can you use anti-inflammatories with Crohns? As taking prednisalone now & then seems an unusual treatment plan, so anti-inflammatoires might be more stable? Or have you other pain relief? As well as all the non-chemical things like heat and cold, gentle exercise and so on. And as Entero says perhaps injections of steroids could work better as could even out. the peaks & troughs.

But generally it doesn't sound as if it's working for you. Always a difficult decision to decide when you have tried a drug long enough, but if you've been on a reasonable dose of MTX for 4 months or so I reckon your instincts are right & it's time to push for a different approach.

[Entero in reply to helixhelix]

Sadly nothing containing ibuprofen when you have Crohn's helixhelix 😏

[helixhelix in reply to Entero]

Yuk...it's so useful to have options. It is there other pain relief possible as Samantha sounds as if she hasn't been given a lot?

[Entero in reply to helixhelix]

Just cocodamol for me, which work pretty well but I find I quickly become dependent upon them so have to ration. I have on a really rare occasion taken a couple of ibuprofen so know what we're missing out on. Drug envy now added to everything else 😉

[lotsoissues]

I wish I knew...you and I seem to have a lot in common. I too respond well to prednisone but my doctors are saying no no no...can't take it long due to side effects but I'm not doing well on all the other drugs either. Just got over cellulitis due to cimzia.

If you want my opinion given your chrons diagnosis I would question why you haven't been diagnosed with psoriatic arthritis as opposed to rheumatoid arthritis...research the connection and really educate yourself because I have found that my instincts about what I'm going through in my body sometimes have been more accurate than all of my doctor's opinions and I do mean "sometimes"...I think when you have syndromes and diseases that are still being researched it means that truth about them is not really known all that well yet and we as patients are a wealth of knowledge to doctors when it comes to our own bodies and the more knowledgeable we are about what's happening in medicine the better we are at assisting in our treatment.

An interesting thing I discovered when researching was that for any particular biologic that has been used for the treatment of autoimmune arthritis there really is only about a 50% efficacy rate AND given the fact that there's many pathways in our biology to inflammation (hence the anti tnf biologics combat inflammation differently than say the ones that fight some newly discovered pro inflammatory interleuken cytokines) it's important to discuss many options with our doctors who have sometimes, as I have noticed in my case, have never tried in four years some of those biologics that attack those newly found cytokines that seem to also play a role in the disease in some people.

We all need to be our own best advocates and be knowledgeable and take an active role in our own management because let's face it...our health and quality of life is of most importance to us, their patients.