Anyone here with Sjogren's Syndrome and/or Lupus?

Allthecolours

Hi Louisa

I don't have Sjogren's or Lupus but I noticed that your post hadn't had any responses.

If you type 'Sjogren' and 'Lupus' separately into the search bar in this group it does bring up a couple of old posts which mention it. However, if you choose 'anywhere' rather than just the 'head and neck cancer group' when looking for results there are quite a few recent posts throughout the community. You could have a look through those and see if any of the posters are experiencing similar problems to yourself, and contact them if they are.

I hope this is of some help.

x

Hi Louisa,

I have a mixture of auto immune diagnoses including these two although I am not currently on meds for any of them. I've recently had surgery for a parotid gland tumour so should be starting radiotherapy soon. I've noticed a few of the side effects of radiotherapy are similar to symptoms of Sjogrens and it's quite likely to trigger a flare I guess. I'll let you know if this is the case with me. x

Hello, Lyoncat,

Thanks for responding - nice to "meet" you, though not nice to meet you here. 

I'm glad you've already had surgery from the point of view of the Ro antibody causing sensitivity to drugs they give you as part of the anaesthetic; I didn't want to be scaring you about this, but if you've already had surgery, you'll know whether or not it's an issue for you. Hope it isn't.

I've been taking hydroxychloroquine for 13 years and the oncologist and I have agreed that, although there isn't the research to prove this, common sense would dictate that it's the resulting reduced immune response that has allowed the HPV SCC to take hold. Again, yours may not be HPV, and you're not taking hydroxychloroquine currently. But it's a big issue for me whether or not to recommence hydroxychloroquine and possibly increase my chances of the cancer recurring. I'm now six months without hydroxy and have the joint and muscle pains back, as well as brain fog!

I'm not going to suggest what will or won't happen to you as a result of the radiotherapy because I don't want to worry you about things that may never happen. Also mine was oropharynx plus cervical lymph nodes both sides. But maybe we can keep in touch (I'll send you a friend request message thingy) and compare notes afterwards. Or during, if you like.

I wish you all the best with the radiation. There's lots of advice on here about coping with masks. It is, of course, completely painless and for me the worst thing was the faff of going to the hospital every day for seven weeks. The radiographers are lovely and very knowledgeable and will look after you well. 

I didn't have chemo because of my Ro antibody and the drugs they need to give with the chemo, but I have had a "complete treatment response", which means the radiation alone worked. 

Very best wishes with all of it.

Louisa

x