AS and covid vaccine.

hi James
Yes it’s a great community,very helpful
Thank you.
I think actually going through loads of online medical records I had it in my twenties but took so long to get diagnosed and only did because of the covid vaccine.
I just realised are you on instagram?
I am sure I sent you a post at the weekend?
Everything right now is up and down treatment well I did refuse the injection but looking at maybe having infusions instead I don’t know yet.
How are you?
What treatment do you have?
Thank you
Take care
Jan

Hi Jan,
Oh boy !!! I hope your rheumatologist gets through to your doctor. It's frustrating when you are trying to reach your doctor and not able to get through.

Have you been done steroid injections before? One thing I haven't tried. I hope you find some relief when you do.

Sending warm hugs your way,

Nicky (Team Member)

hello Nicky, no heard nothing,plus when I rang a rheumatologist as having different ones due to strike action, I explained I have severe gingivitis and has got worse since having AS I am having infections in my teeth,I am waiting for a denture but still have teeth to be taken out,I have had antibiotics twice this last month and no one told me that if I have my two teeth out and have a steroid injection I am more prone to infection,but I didn’t no this till today, so Christmas next week and want to see my daughter and grandchildren for Christmas as haven’t for the last three Christmas times
But if the AS gets worse as not good now and my teeth have an infection as sore now, I can’t have teeth pulled and have a steroid injection at same time as will catch an infection as the steroid injection lowers your infection and with an open wound and it’s winter here, covid is high again I am struggling in what to do, she said it’s up to me, the dentist can only see me on the 22nd December to take teeth out but the steroid injection is on the 22nd fours hour later, I can’t have both.
The dentist wants me to wait till after Christmas as said I won’t be able to chew anything plus if I get an infection over Christmas antibiotics are short and dentists are closed so he said would be better after Christmas to have teeth out but it all depends on pain so I haven’t a clue what to do and really fed up,has anyone had similar do you know?
Take care
Jan

I do have both MS and AS. I was dx with MS in 1998 and was on biologic grugs for 13 years. 2017, dx with AS, due to HLA-B27. My grandson has Uveitis and my daughter thought there might be a genetic link because she was having back problems. All 3 of us have that gene.


I had to go off the MS drugs because of skin cancer. Switched to Paleo diet (Autoimmune Protocol) and have been on it since. In 2017 the Rheumatologist looked at the HLA-B27 and recommended Cosentyx. Without the rest of the info like MRI and such, insurance denied, so we decided to ignore. I think I've been dealing with more AS pain than I figured. I have lots of spasticity with the MS, so my Neurologist and I have been dealing with my pain through that route, probably hiding some of the cause.


I decided to go to a Rheumatologist because of sciatic pain and he discovered that I def have AS and thorasic spine1-10 is fused. He took part in a study that proved that people with MS get lots worse on TNF biologics. I am now on Cosentyx. It is starting to make a difference in my pain levels. I still walk. I exercise a lot. Still have trouble with sleep due to pain, but I'm hoping that improves. I work out with other women 60 & older who have MS on ZOOM using the MS Gym format. For me, exercising really stops the pain.


When I stopped the biologics for MS, Dr Whal's Protocol came out for people with MS. She said "If you can do nothing else for MS, stop gluten." I haven't had gluten since 2011. It took 3 months, but after that my fatigue lessened by a large amount. In 2017 when I found out I had AS, I ran into a website, called "Ralphitness", which is now offline, but it taught me a lot about pain management and self-esteem in managing AS. Between exercise and diet and managing self-esteem issues, I think AS and MS are managable. Altho, after a pain filled night, I sometimes doubt it.

Thank you for sharing your journey with health. You are a warrior. I was put on as well on Cosentyx due to the lesions found on my head MRI. I am glad you said that about your study and TNF blockers. My rheumatologist said the same. I can no longer be on any. For now I am as well on Cosentyx. I been on Cosentyx now for more than a year. It has helped more than any biologic I have been on. I do have pain and get flares. But has helped me to find energy to move more.

I hope you Cosentyx will help you as well. It works very slow. But it has helped a lot. I know how hard it can be having more than one disease. But from what I can see you are doing the best you can and have an amazing plan.

Sending you hugs and lots of positive vibes your way,

Nicky (Team Member)