Light at the end of the tunnel

[Chickenkeeper2015]

Before I start, my sympathies to those of you who don't achieve this or currently feel like this is a million miles away, but I thought it might offer hope.

OH has been on his horrible RA 'journey' for about 18 months. At his worst he was more or less unable to get out of bed, couldn't press his deodorant button and struggled to wash. His rheumatologist hasn't been able to give a confirmed diagnosis of any particular disease other than sero-negative inflammatory arthritis.

He has been through methotrexate pills, to methotrexate subcut, added hydroxy, added sulfasalazine, then dropped the hydroxy and Ssz and added Benapali.

With the triple therapy the RA was becoming controlled but the Ssz was having unwanted side effects, hence his rheumy managed to get him on biologics. We're aware that there are likely to be backward steps at times, but (frozen shoulder aside) he's now feeling the best he has in over 2 years and almost back to normal. His CRP which hasn't been below 20 in all that time and was above 80 at times was 3 at his last blood test - that's after 3 weeks on Benepali.

These drugs can work, but it does take time. Hang in there everyone.

[SoulmanPaul]

That's great news...very happy for both of you! Fingers crossed I'll be starting on Humira soon and hoping to have a similar response!

Paul

[Gnarli]

Fantastic news for you both. Thank you so much for sharing as it gives us a lift in spirits and hope for the future. Wishing you all the very best for continued good health

J

[Riedenise]

That's great news! I hope your OH continues with the great improvement. It's always good to hear from someone who has positive things to say, it helps us that are struggling that Yes there is light at the end of the tunnel. Thank you for sharing. X Rie

[Needforname]

It's great to hear that there is light at the end of the tunnel! It truly must be life changing when you feel that pain slip away. I'm still waiting for my light at the end of the tunnel. Every day is black.

How long did it take this "OH" person you mention to experience help from the biologics? I've been on methotrexate for 6 months now and enbrell for 4 months and feel worse than ever. Even according to the drug maker's manuals, these drugs should be working by now. I'm always interested hearing how long others had to wait. Any feedback you can provide regarding wait time for relief would be greatly appreciated. Thanks

[Chickenkeeper2015 in reply to Needforname]

I'm really sorry to hear you're struggling. Also sorry for the forum speak - OH is 'other half'. He was on methotrexate for a total of 11 months before his biologic was added. After about ten months on the methotrexate (which also included 6 months with hydroxychloroquine added and 4 months with sulfasalazine as well) he started to feel significant relief from the arthtritis, but was experiencing quite severe nausea and itching once he started the sulfasalazine. The improvement in the arthritis carried on fairly smoothly as he transitioned onto Benepali (which as I understand it is a 'bio similar to Enbrel).

It sounds like you're following a slightly different path as you don't mention having tried triple therapy on DMARDS before adding the Enbrel - but I have read that if it's going to work you should begin to see that within 12 weeks, so perhaps you will need to try a different drug?

[Needforname in reply to Chickenkeeper2015]

Hey there. Thank you very much for reply. I appreciate it. Yeah, I think the reason I went straight from Methotrexate to MTX + Enbrel is because of my very high SeroPositive levels (high anti-ccp) which apparently see better results with biologics.

Not sure where to turn next. You mention that it took 11 months before your OH noticed results from the MTX. If that's the case, then maybe I just need to give it longer. I have actually been on MTX for around 8 months, but there was a 2 month gap when I stopped taking it when I began on the Enbrel. My doctor never told me I was suppose to be taking both of the drugs. But it still has been 6 months straight.

I guess I'll just have to wait until the doctor decides she wants to switch drugs again. Nothing ever works. Anyway, thanks. It's nice to hear other's experiences to help me gauge how long I should be waiting for a drug to work. Hope your significant other has continued success.

[Furle in reply to Needforname]

I was lucky and Enberel worked almost immediately for me. Hope you and your Rheumy team find the right drug for you.

[Needforname in reply to Furle]

That's impressive it worked so quickly for you. Great to hear. Thanks for the kind words.

[nomoreheels]

So pleased to hear this. I've been aware how difficulty it's been for you seeing your husband struggle, it must be awfully difficult watching your partner be in so much pain, I know I feel that way with mine, you feel so helpless. Continued positive results to him & hopefully this Christmas will be a more relaxed one for you all.

[Mandalou]

Hi Chickenkeeper

I'm so glad you have shared your OH journey with us.

His story echos so many others. Mine included.

The beginning of this journey is always so hideous and you feel like you will never come out of the other side but it does get better, once you find what's right for you and your particular variant of Inflammatory AI disease.

I hope you have a wonderful Christmas together with continued stability regards your OH health.

Mx

[lotsoissues]

Thank you for the positive attitude. With this disease or syndrome or whatever it is pain becomes our gauge of how well our day will go and it is good to know that there is hope. My only concern is really knowing what it is that is causing this physiological crisis because for me and I’m sure quite a few others the pain cane like a ton of bricks almost like an attack and we haven’t felt the same since. I don’t like not knowing and I honestly believe that these drugs maybe doing more harm than good. My CRP level has been as high as 45 and as low as 1.7. I didn’t feel any different relative to level. So, is the Crp level a good gauge of disease activity but not pain level for some? There’s many unansweeed questions and since the success rate of these drugs is actually nothing to brag about in clinical trials I often wonder about the overall effectiveness of them. I have been interested in living a very basic and simple life and really assessing the research literature that has been current has made me realize what little they know about autoimmune disorders.

[LadyJan in reply to lotsoissues]

Hang in there, there has to be something at the end of that tunnel....I am climbing in top of it in pain... wrists, hands,stiff neck and left foot all giving me hell. Tramadol given..well it knocked me out first lot then after second lot made me sick. Gone back to 1x30/500 & 1 8/500 co-codermol..short relief a bit. I just want my bed and water bottle...not eating too well either. My enbrel is in hands of manufacture I am told. I am counting on it. No Christmas pressies this year, can't and don't want to go out.

Miserable me

Ladyjan

[Hels1989]

I am sero negative and this gives me hope 😊 thankyou for the post x

[Smiler53]

That's great news, so pleased for you both. x

[Cherub198889]

Such good news!!! Thanks for sharing

[Hidden]

Hi. I am posting to you as you are one of the few posting on this site who is an OH to a male RA sufferer. Last year my fit OH had various aches and pains which the Gp was not interested in, then a major flare and diagnosis at Xmas. This first consultant gave steroids only so he only had one steroid shot when with Consultant 2 prior to Dmards. The effect was very short lived and had side affects. 3 months of 2 Dmards have yet to take effect and I understand it takes time. Question of the moment; How did you manage around work, if you work and how did your OH manage around his? There is no possibility of my OH returning at present. GP over the phone advises phased return after 1 month off, but he can barely walk. Obviously you can choose not to respond to this email. I won't be offended!