Weird pain

[Bully915]

Hi warriors not been on for a while. Does any one suffer from headaches that's tender to touch light headedness and shaky hands as well as very painful joints. Who are on methatexrate, sulfasalazine and retuximab

[Madmusiclover]

I know Sulfa gave me headaches. I didn’t get past 4 days on them. You shouldn’t need to suffer like that. Speak to your nurse. X

[Bully915 in reply to Madmusiclover]

Been on them a good few years take 7 daily but this pain just started about 6 months ago

[LoneEra]

Sorry to hear this. If your joints are painful, it would seem that the meds aren’t doing their job. As for the headaches and hand symptoms...hard to tell...could be so many things.

I think you need to book an urgent review with your rheumatology team. Do you have their helpline number? If so, give that a ring. If not, call the hospital and ask to be put through to rheumatology.

Don’t suffer in silence xx

[Bully915 in reply to LoneEra]

Thanks got video chat next week with rheumy have nuro as well incase it was something different but due to me having a multitude of health probs she thought it might be a side effect from one of my meds and changed it

[medway-lady]

I don't sorry I don't so just thinking worth mentioning this as I'd never heard of it before but my son has literally just been diagnosed with a rare type of migraine that makes the arm go numb and shake and it has only a minor headache. He had an MRI Wednesday to rule out a stroke and is super fit. I'm not saying it is but it might be worth a look up. He said his left side went from numb to hurting with shaking too.

[Bully915]

Sounds similar does his hair feel sore to touch as this is the only way I can describe mine the rest feel very similar so not sure if you don't mind me asking what is the rare condition called

[medway-lady in reply to Bully915]

Hemiplegic Migraine have a read up on it, his left arm went numb then hurt then his neck looked like a stroke and was blue lighted to hospital. I urge you to call 111 or talk to your GP/RA consultant but don't leave it. He said his head hurt but didn't have an awful headache as you'd expect with a migraine. Anyway its better to be safe than sorry so get some proper medical advice if your concerned. This hit my super healthy son out of the blue and he has no medical issues at all. Terrified me so thank God he is ok and praying it doesn't happen again for years. The hospital said its treatable so he's awaiting seeing the consultant next week but they rang him after the MRI to say not a stroke so he can drive again and didn't worry for too long.

[Bully915 in reply to medway-lady]

Will do had mri and not a stroke awaiting to see consultant again

[Lolabridge]

Sorry to hear you're suffering. Please contact your Rheumy nurse or patient helpline today and ask for proper medical advice.

[Mistress]

Hi bully915Sorry to hear you're suffering, I have been taking sulfa for several yrs now. I have all of the side effects, tinnitus, easy bruising and I get an occasional headache but nothing like yours. Think you need to discuss this with your team, it sounds like it doesn't suit you and they would be able to advise moving forward, good luck and hope you find the drug that helps rather than hinders.

[Bully915 in reply to Mistress]

Thanks seeing rheumy next week

[Pasjc]

I have all that on a biological injection. Sulfasalazine was my 2nd dmard i felt very ill and had chronic diorhea while on it. Good luck getting sorted xx

[Bully915 in reply to Pasjc]

Thanks for responding

[Thebill21]

Hi Bully915I've been taking Sulfasazine for at least 6 years.

I must be one of the lucky ones as I've not had any side effects. Having read the information page it does say that headaches are common side effect.

When I first started taking it I gradually increased the dose over a few months. As you've been taking for several years it maybe worth speaking to your Rheumatology nurse or your Consultant. You shouldn't have to put up with the headaches. Hope this helps. Good luck. Take care

[Bully915 in reply to Thebill21]

Thanks will ask them next week