What is like being "normal"?

[EasternBunny]

Hey everyone,

A daft question again Sufasalazine has kicked in or at least blood tests show that. However I still have quite puffy knuckles after a working day (see pic) while all the girls help now. A few months ago I couldn't open my hands for days or even weeks, so I guess it is a progress though. Also am still fatigued and experienced a few "clear days" after months of so called brain fog but generally I am much "slower" than I was before.

All in all, there is a slight progress but still miles from normal.

Rheumy nurse told me that probably we would have to add MTX to the mix but as Sulfa has kicked in she decided to keep me on it and we just added more analgesics (paracetamol and co-codamol at bedtime).

At the moment I just feel overwhelmed and want to stop college (two weeks left but I have just no more energy to finish essays, assessments, etc.) and also starting a new job in 3 weeks.

The question is: Does it worth to ask for MTX or is it better to wait more for the Sulfa (I'm taking it for 3 months now)?

[Azabat]

That's what my left hand, and the rheumy described it as 'quite swollen'. My inflammation markers came back normal too, but she said that there can be (and is) RD activity regardless. I've had to come off sulfa as it was too hard on my stomach, but I'd say if you're still looking and feeling as you do, that if mtx is suggested it'd be worth a shot. I'm not a doctor, but you still sound pretty flared up to me.

-Bats

[EasternBunny in reply to Azabat]

Thank you Bats, hope you're doing well now. I am going to give a call to rheumatology next week, and keep a diary just in case. I have a great medical team, however I am not sure what we should achieve, and initially I wanted to take as little and "mild" medication as possible.

I also reduced my working hours and took plenty of rest in the last couple of months, consequently I don't need as much help now (with cooking, shopping, etc.) and morning stiffness lasts about 1-1,5 hour, what is a progress indeed. But am not sure how will I function in a 30+ hrs job...

[helixhelix]

3 months is still quite early, so you may well see more improvement from just the Sulpha. But if it doesn't improve more in the next month or so then I would advise you try MTX. The combination has worked brilliantly for me, but like you I started with one drug and then had to add another one and eventually it all took effect.

[EasternBunny in reply to helixhelix]

Thank you so very much. will see what happens, sometimes it is difficult to listen to my own body and be patient at the same time, while everyone else says "you're fine". I will see what happens in the new workplace and if I don't cope I can still contact the rheumatology.

Have a lovely day,

Agnes

[cathie]

I agree with Azabat, that hand looks swollen and inflamed to me. My hand tends to look like that in the morning and as I move it (gently) it does return to a recognisable hand. I found mtx great. It did have a horrible loosening effect on my bowels, but I did work through that and it held back a lot of pain - which returned in spades when I was taken off it because of liver problems. I hope you can make progress and feel better.

[allanah]

Don't know, never been normal !! ( joke to cheer you up lovely xxxx)

[Victoria-NRAS Partner Moderator NRAS]

Hi Agnes

Definitely not a daft question! Worth talking through the options with your rheumatology team, but these two drugs can work very well together and are the most commonly prescribed. Adding in more than one DMARD is quite common practice, and often happens when you have been on a drug for 3 months, as it is around that time that they can start to tell if the drug is working, though the sulfasalazine could continue to improve for another 3 months or so until it gets to its full potential.

If your rheumatology team are suggesting this, they may feel that it would be better to add something in now (given that the methotrexate will need a few weeks to start to work) rather than wait another 3 months on sulfasalazine and then have to wait another 3 months to see if the methotrexate helps.

Kind regards

Victoria

(NRAS)

[Hidden]

My hands were that swollen too after being on hydroxychloroqine for 6months. My rheumy said hydroxy was workiing, I didn't think it was. I now take sulfazine with hydroxy and I have noticed a slight difference in less than one week. I'm not a doctor, I just want to tell you my experience. Take care

[EasternBunny]

Hi ladies,

That's me again

Today, after one hour of work my legs gave up, I was barely able to walk, bf had to take me home. What is the "protocol" right now? I am going to call the rheumy helpline on Monday because it has never happened to me before (I spent the whole day at home yesterday). I am afraid a new job is not realistic right now

Thank you,

Agnes

[allanah in reply to EasternBunny]

Hmm maybe not good timing for new job but hang on in there! Do call the team and get help. I often get a steroid jab and feel much better 24 to 48 hrs laters

[wannabhealthy]

Hi eastern bunny. Yes you do have swollen knuckles and I also still have swollen left ankle after 4 months on sulphasalazine and hydroxychloroquine. I have also just been prescribed methotrexate to my dmard medication mixture.

Hope this will help you. Keep taking notes and keep us informed. X

[EasternBunny in reply to wannabhealthy]

Hi wannabhealthy, thank you for your response. Probably it will be the next step as my knee joined in the game yesterday Actually, I don't really want to stuck in bf's flat for the whole week/month

Take care,

EB xx