Hi all,
I've been st thomas's. Hughes clinic. The consultant was lovely, started on plaquenil and vit d with calcium, nobody noticed before that vit d level too low.
Referral to a memory clinic, to try help with brain fog, cognitive disfunction etc. Anyone know of one in midlands area, that is any good with us hughies.
Feel relieved to be in right place at last.
Take care all. Gentle hugs jessielou xxxx 
xxxx
Goody x
Fantastic news Jessie . Really intresting to know you vit d low as well as me maybe something in that but hey great you on the road now .
ps there myself next week, having not been there since my last child was born 12.5 years ago.... that is how long it has taken me to get back in since moving to Suffolk. M
Hi Paddy,
Would be interesting to know how many of us are low vit d. Apparantly can cause muscle aches, cramps, problems with kidneys etc.
But then so can Aps, lupus, etc.
Another coincidence???? Hope you well today xxx
Hi Mary,
So glad you getting back to St Thomas`s after all this time. I hope they get you sorted and settle things down. I also hope they sort the issue of testing for your children. Let us know how you get on!!!
Hope you well today. xxx
Take care gentle hugs jessielou xxxx (Sheena) xxx
I run a Support Group for FM and as you know there is cross over with Hughes with that condition. The vast majority of FM patients if tested for Vit D deficiency turn out to be so. Apparently they have done studies to see if there are any official links and they say no but you have to wonder given my experience and the feed back we get!
There again I was reading recently that because of the fact that we are all
ourselves with sunscreen now, especially children, they are seeing a return of things like Ricketts which they thought had long gone because mothers are putting factor 50 on kids and not allowing them any natural exposure to sunlight. Also people are working longer hours in offices and again not getting out in the sun and women are buying cosmetics with in built sun screen. We should all be trying to get at least 10 -15 minutes of sunlight everyday or enough so that our skin does not get red or sore. As always its the balance between what is natural and what is too much.
So glad you are getting the right treatment now jessie. My daughter goes to St Thomas's next week too. I will be starting Plaquenil soon too, you must let me know how you are getting on with it. I have to start with one pill a week and gradually build up to three as I can manage it.
Moving house this week-end so stress levels through the roof!!
Hi Lynn
Thanks for your post hon, I hope your appointment goes ok next week.
I don`t envy the house move, We moving soon and dreading it, so much clutter and junk to get rid of, Oooh I hate moving!!!!
Looking forward to pub life again though. Used to run a really busy one, going into a quieter village one next month, so onwards and upwards.
Take care, gentle hugs Sheena (Jessielou) xxxx
Jessielou so happy your appointment went well xxxxxx
theres an excellence centre in birmingham. Rhemotology in queens elizabeth hospital is the lupus excellence centre of the midlands. i saw proffessor gordons team - hope this is of help
can i ask how you got referred to the memory clinic, i have terrible problems and because birmingham is a way for me to travel im having no follow up only referral back to my local hospital to heamotology who i dont particularly have faith in - i dont even know if i developed more symptoms that they would put two and two together and link it with aps!
Hi Emma
Thanks for info about Birmingham, desperately need local Rheumy who understands Hughes, lupus etc so thats fantastic. Hughes clinic consultant at st Thomas 's referring me, just need to find good memory clinic to go to.
I know what you mean about not having faith in some drs, but often they just not up to date. Sadly too often.
I hope you well today.
Take care gentle hugs jessielou x x x x x
Hello Just to add to this, last time i saw Prof Hughes I had terrible problems with pain in my feet and lower legs as well as pins and needles in my lower legs and feet. He said I had tendonitis in my feet (and also in my hands) which was causing me a lot of problems but he felt that the additional pain and pins and needles might be caused by vit D deficiency. I had a test and he was spot on, my Vit D levels were on the floor so he prescribed a very high dose Vit D which I have been taking for nearly 12 months. Tendonitis is still a problem but the pins and needles and other pain has gone!! As an aside I have been taking plaquenil for about 8 years for joint pain ulcers tiredness etc which does a great job but the vit D deficiency created other problems. Apparently (and I hope I have got this right), if you have autoimmune issues the body tends to deplete itself of Vit D which coupled with the fact that we dont go out into the sun that much can make it quite a problem. If someone knows more on this I would be interested.
Hi Elisabeth
I have similar pains in feet, legs and hands along with numbness etc.
I`m really hoping the Vit D helps. Also fingers crossed the plaquenil does the trick.
I`m sure like you say avoiding the sunlight doesn`t help with Vit D levels, but the itching and rashes drive me crackers so is no win situation really.
Hope you feeling well today
Take care, gentle hugs Sheena (Jessielou) xxxxxxxx
Hi Elisabeth,
I have been recently experiencing terrible pain in my feet and find it difficult to walk on some days. The pain is like walking on hot broken glass and they feel so sore inside. One day it was so painful it reduced me to tears I did not know what to do for the pain. I mentioned this to the consultant and he said it was the nerve endings in my feet and the electricity in the body which I don't understand. i was not told what i could take for the pain so if you can tell me what to take i would appreciate this as I don't think i can take it for much longer-I feel a freak !!! I don't think |i have ever experienced anything so painful in my life before. I am taking Heparin injections and have to take a calcium tablet to prevent me from Oesteoporosis.(sorry if i have not spelt this correctly) This was prescribed by the consultant because Heparin can cause brittle bones. Do you think if I ask about Vitamin D it will help with the pain ?
Thanks for that Elisabeth would be woth investigating the VIT D and i am on plaquinal been taking it for 10years and it does work it takes off the edge i found it does not get rid of it all but it does take the edge off.
paddy
Hi hunny, glad your appointment went well
Thought they would put you on Plaquinil, I've been on it for a few months now & feel the benifit! still get joint pains but not as bad, still get pins & needles & cold right side etc.....but perhaps I too should ask about the vit.D ?!! I must admit tho' I am a sun lover & luckly for me (so far) am able to be in it, which I know some are not 
Glad you were happy with your appointment & got results Sue xx
My rheumatologist wanted me to go on Plaquenil but I was afraid. I have small vessel lacunar disease. I had a stroke 6 years ago. But i also have mild hemophilia so they cant put me on Plavix or other blood thinners because I hemmorhaged. I take 81 mg of aspirin daily. My INR was 1.0 last month. I live in Long Island NY. Does anyone have any suggestions for me or know of a dr. who specializes in APS? I see a neuro a rheumy and a hematologist and they agree on the aspirin. I feel like it might be too little. sorry this was long
Hello just saw you part under this thread.... have you tried approaching these people, who will really help in your search americanaps.org/. and may have local lie of land for you. MX
Hi thank u MaryF. Im going to go on today and I have an appt with my rheumy next week. He had mentioned Plaquenil but i was chicken about going on it ;D
Anyone who was discharged from St Thomas's 
APS Clinic at St Thomas'
