Hi all. I have cutaneus lupus and sjogren's syndrom, I also
have atrial tachycardia for which I take a beta blocker called
Bisoprolol. I recently read that this could affect the lupus could
anyone enlighten me on this?
Hi whatever you do DO NOT STOP the drug unless your cardiologist or Rheumatologist has agreed. You don't say what autoimmune drugs you are taking. However whatever, please ring your GP or cardiology/rheumatology nurse before coming off any heart medicine.
Thanks Pam. I'm taking Hydroxychloroquine, Losarton
(High BP) as well as Bisoprolol. No I don't intend coming
off any medication until I speak to my rheumy. I have been
having really odd sensations in my arms and legs recently
It started with burning prickly feeling in legs, that has now
changed to a feeling as though ice is running through my
veins, especially my arms..... really weird. I have been
trying to figure out what the cause could be. My GP thinks
it's just one of those things that Lupus/Sjogren's throws
up! I have an app. with my rheumy next month so will
discuss it with him. Do you have any ideas?
I have just looked it up, it doesn't mention Sjögren's or SLE or cutaneous Lupus however if you have Psoriasis you do need to see your GP!
Where did you look it up Pam? I read it in a booklet titled
Lupus: A patient care guide for nurses and other health
professionals, published by U.S. Dept. of Health and Human
Services. Published 2001.....quite a no. of yrs. ago. so info.
could have changed by now.
Hi the prickly burning sensations could be small fibre neuropathy which is associated with Sjogrens/SLE. I have just looked up Bisoprolol in the BNF the book every UK doctor will have, it can give muscle weakness but in Sjögren's and SLE that is a symptom too. I don't take Beta blockers, there are so many in the contra indications section. You may possibly be getting a side effect, but more likely it's the Sjögren's as Bisoprolol hasn't been mentioned at all. I personally would stay on them as you only have a month before your next Rheumy appointment. I wouldn't advise you to come off any heart medication unless you are told to by your GP or consultant. I have cold numb tingling feet and hands, and certainly muscle weakness but as I don't need a beta blocker I am sure in my case it is the disease. I am on MTX methotrexate. The only contra indication I could see in the enormous list of Beta Blockers was for Pilocarpine which I do take, it didn't do me any good last time, and I doubt if it will this time either! It's for giving you moisture to your mouth and eyes. I am taking it in drop form. I wasn't keen as I certainly have Hyperhydrosis (excess sweating) in my case my head! That is another neurological problem too.
Thanks Pam for all the info. Yes I did come across neuropathy
in connection with Sjogren's so I think that is very likely to
be the cause of the tingling. It's always very difficult when
you have a chronic condition you tend to assume that
any symptoms you have is attributed to the condition.
I had a blood test last week and it has shown that my sodium
levels are quite low. We are repeating the the test just to
check if it was a one off.
Yes it's possible as of course with blood pressure problems which I assume is your reason for the Beta Blockers you are told to avoid salt. I with low BP am now eating a little! You can't win with Sjogrens/SLE but certainly the neuropathy may well be due to your Sjögren's. Interestingly there are 2 neurologists talking about Sjögren's and neuropathy and POTS! Are you a BSSA member, if so you should find it most interesting. Unfortunately we do seem to get some odd ideas that come from the USA I do tend to stick to the information on Patient or in the BNF when it comes to advice. I am under the BSSA President Dr. E. Price and would certainly go with what is said in the Sjögren's Book which is the 'bible' on Sjögren's Syndrome.
Thanks Pam, I'm comparatively new to all this, I was diagnosed
in Jan. I'm not a member of BSSA but I will now join.
How do I access the talks on neuropathy? and where can I
find the Sjogren's Book?
Thanks again for all the info. I really appreciate it.
Hi Cloch47, I have lupus and have for many years. Look to the hydroxycloroquine it causes peripheral neuropathy whic it sound like you have. I stopped it and my Amlpdopine first the hydrocloroquine which reduced the PN then the Amlodopine. The PN is gone. But work with your doctor when stopping these meds. Goo health to you!
Cloch the BSSA phone number is 01214780222 I run a FB group for BSSA members called British Sjogrens. Good luck!
Thanks Pam, I have now joined BSSA.
Wonderful if you wish to do FB look for British Sjogrens. My consultant Dr. Price is the president. I live in Sussex but I see her in Swindon. She has been so kind and caring. The added bonus for us is my eldest son, wife and grandchildren live there!
Hi Pam, just an update on this thread. I saw my Rheumatologist yesterday and he has confirmed that the tingling that I have
been experiencing is due to Sjogren's/Lupus. He is just going to
monitor it for now as thankfully I'm not experiencing any
numbness. Hope that remains the case.
That's brilliant Cloch are you a BSSA member? If not why don't you join the BSSA we run a support group for Sjögren's sufferers on FB and would be glad for you to join. I and my admins have a wealth of knowledge about Sjögren's and are BSSA members ourselves.