Author Topic: NOT Sjogren's after all...  (Read 8040 times)

MAT51

  • Hero Member
  • *****
  • Posts: 724
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: NOT Sjogren's after all...
« Reply #30 on: December 06, 2014, 09:11:45 AM »
That is good. Would you be able to get B12 injections and just take Vit D3? You may well find things improve enormously of you do - very easy to address. I wonder if you've tried Hudroxichloraquine yet as this is a med that would cover the RA and SS and many with RA take it in combination with other drugs. Matx
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

  • Guest
Re: NOT Sjogren's after all...
« Reply #31 on: December 06, 2014, 10:08:44 AM »
At least years ago, I had prescription B12 tablets when the level was too low. Another doctor prescribed vitamin D + calcium tablets, which I haven't been taking anymore.

Probably they wouldn't give B12 injections -- the doctor actually told me I should eat meat!!! I do hope he was joking.

The hydroxichloraquine I haven't been offered. Since my rheumy thinks I don't have the dry eyes or mouth, he probably wouldn't. 
-Kikil

MAT51

  • Hero Member
  • *****
  • Posts: 724
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: NOT Sjogren's after all...
« Reply #32 on: December 06, 2014, 10:16:33 AM »
Well I ask because it's very often used (certainly in the UK) for people with RA as a combined therapy with MTX or Leflunomide as it helps with broader symptoms - as well as being a drug used for Lupus and Sjogrens. I took it for 18 months before the dry eyes became such an issue for me.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

  • Guest
Re: NOT Sjogren's after all...
« Reply #33 on: December 07, 2014, 05:20:29 AM »
The only RA symptoms that I have noticed is occasional joint pain or bursitis. When I take the Leflunomide, no pain...or at least very seldom, and then I get cortisone shots.

So far all the blood sugar tests have been ideal, thyroid tests good...only the D vitamin and B12 vitamin are low. Hopefully that is going to b an easy treatment plan, and I really do hope that there won't be meds except for vitamin supplements.

MAT51

  • Hero Member
  • *****
  • Posts: 724
  • Hashimoto's, SN RA, Primary Sjogren's, SFN
Re: NOT Sjogren's after all...
« Reply #34 on: December 07, 2014, 06:07:25 AM »
Well of course I don't know how bad your RA symptoms were before you started the Leflunomide but it honestly sounds as though, in your case, addressing the low B12 and D levels may will sort out all your problems apart from RA - and may help with this too. I am hypothyroid and have always struggled with eczema, allergies and dryness, weak nails and spells of severe hair loss so for me the RA was a few years of radical diversion from the normal types of pain and itch and chronic rhinitis etc.

On the Thyroid UK HealthUnlocked forum I occasionally use, many are advised to self medicate with various minerals, vitamins, detox diets and even T3 and T4 and to switch from the synthetic thyroid drug I take to Natural Dessicated Thyroxine. I've often been told that my normal range results are seriously out of whack for thyroid and B12. I respect their views because they are often people who have done much research for themselves and know a lot about the thyroid. But when you have more complex autoimmunity going on the last thing I would want to do myself is to self medicate because it becomes very hard to assess what is helping and what is not. At least if this is done with a GP or a rheumy you trust (to an extent) then you are taking these supplements in partnership with a medically trained person.

So I look, I read, I sometimes ask questions but will not self medicate with B12 or switch to NTD by myself as many on the TUK HU advise people to do.

Good luck with getting to the bottom of it all - your rheumy sounds very thorough and that is good. Mat x
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

mistyrain

  • Guest
Re: NOT Sjogren's after all...
« Reply #35 on: December 07, 2014, 11:06:14 AM »
Hi Kikil and Mat and all: seems I have gone through such similar routes over the years on the topic of various deficiencies and sjogren's that I thought some of my experiences might be of help.  Incredibly tantalizing when trying to interact with various specialists and so on.  I recently tried to read a long paper by Dr Julian Birnbaum (Johns Hopkins) on "Neuropathy in Sjogren's" - among many other things he says:

"the eclectic permutation of peripheral nervous system (PNS) syndromes which occur in sjogren patients are among the most common and severe extraglandular complications" and goes on to review the various neurological complications in intricate detail.

He also goes on to mention various pitfalls of diagnosis and ...."a significant subset of patients may present with mild to no sicca symptoms...."

The entire paper is available to read on the internet and some people here have had the good fortune to be seen by him.

Re: vitamin D and also B12 and magnesium deficiences also.

It was fairly inexpensive and easy to bring my vitamin D numbers up once I had found out that I was very low but I did have to have the cooperation of my doctor to prescribe the initial high doses and each year about this time of year I start paying attention to taking enough D3 since I also try to pay attention to getting some sun in the summer.  There is a lot of information available on the internet as you no doubt have noticed.

The B12 deficiency was a little more complicated and it is something that is important to pay attention to in sjogren's as lack of intrinsic factor and dryness can cause the B12 not to be metabolized sufficiently.   I had to have B12 shots for a while after testing that I was in low normal levels, but the new doctor I had a year ago suggested I might be able to take the B12 sublingually and it might prevent having to have the shots.   I tried that for several months, not being quite sure how much to use and was tested again last week.  My tests came back quite high and I will continue to take it sublingually but now I have a good idea how often.

Now I had read that magnesium deficiency can affect the nervous system and many body functions and that it was very important to have a good balance between calcium and magnesium.  I pondered about this for a while because I had read that blood tests for magnesium deficiency were not always adequate.  So I decided on my own to take magnesium supplements the last few months and hope for the best.  They did seem to be helping.

This doctor I now have was very helpful when I last saw him a couple weeks ago and said that he could have the magnesium tested.   A letter from him last week stated that my magnesium was in the low normal range so that I should continue taking it.  Now I wonder what it was before I started taking it.  The neurological symptoms I have with sjogren's are the most upsetting of all and some of the symptoms are quite bizarre (in  my opinion - no one else can even see anything unusual - but pain and sudden escalating pains - oh - I won't go into it).   

So there you have it.  My experiences may save a little time, money and anxiety and although many doctors are quite agreeable to taking calcium, few of them seem to give magnesium deficiency much attention.
To your health
Edith



« Last Edit: December 07, 2014, 11:08:20 AM by mistyrain »

kikil

  • Guest
Re: NOT Sjogren's after all...
« Reply #36 on: December 08, 2014, 07:27:27 AM »
Thank you, mistyrain / Edith for sharing your experiences. I think you're right, it is sensible to wait for the doctor to advise me on the vitamins needed at this point.

The results were posted online, and I got SMS messages telling me when they were ready; this took place at the weekend, and I am still waiting to discuss the results with the doctor. However, I stopped in town at a health food shop and picked up a bottle of spirulina capsules. They apparently have vitamin B12.

The reason I was in town was for an ultrasound of my neck. Here is the conversation I had with the doctor as he was doing the ultrasound:

Dr: Do you have dry mouth?
Me: um YEAH. Why do you ask?
Dr: Your salivary glands in front of your ears are very small. Sometimes this happens with Sjogren's syndrome.

This is like the punchline in a standup comedy routine. 'Sometimes this happens with Sjogren's..'

I can hardly wait to discuss this with the rheumatologist to see if he can still keep telling me that this is NOT Sjogren's. And hear what medications he is going to prescribe for my salivary glands.

Healing to you all,
-Kikil

Carolina

  • Hero Member
  • *****
  • Posts: 5750
  • —if it ain't one thing, it's another." Roseanne R.
Re: NOT Sjogren's after all...
« Reply #37 on: December 08, 2014, 07:35:49 AM »
Sjogren's - the gift that keeps on giving (and giving and giving, and TAKING!).

I think that almost all vitamin and other deficiencies can be measured with the proper blood work.  I could be wrong (and often am).

And I know that deficiencies can suddenly appear, probably due to changes in the way our bodies are processing food.  I developed anemia in my 60's, and copper deficiency, which is extremely rare showed up last year, when I was 71. 

So we must continue to monitor our health and work WITH our medical practitioners to optimize our treatments.

I wish we could find/ask for complete solutions/cures.  With immune mediated conditions like ours, that is highly unlikely, however.

Hugs,  Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

mistyrain

  • Guest
Re: NOT Sjogren's after all...
« Reply #38 on: December 08, 2014, 09:28:19 AM »
Ah kikil - "sometimes that happens with sjogren's..." - next time you can ask - "what doesn't sometimes happen with sj..."  - reminds me of having hard wax cleaned from my ears last week and wondering if it was such a problem because my ear fluids might be too dry caused by sjogren's.  I will never know.  The nurse said I had very narrow ear channels - hmmmm!  As Carolina says: "the gift that keeps on giving!"

Way back in my distant memory banks in childhood Scotland, I can remember a very health conscious relatiive taking spirulina regularly - all the best with finding that to be a very healthful purchase!

I personally, over the years, have concentrated on trying to improve my general health condition in the hopes that it would help the sjogren's.   Having had way too many serious reactions to meds, this proved to be the only way for me to proceed.

All the best on your next medical visits!  Edith

kikil

  • Guest
Re: NOT Sjogren's after all...
« Reply #39 on: December 08, 2014, 10:11:57 AM »
Thank you Edith!

About a year ago I went vegan + gluten free because I had read it was the 'best' diet for RA. Actually, my joints have felt better, but...apparently I don't get enough B vitamins if I don't do meat.

I just thought I could give the spirulina a try. Meat doesn't appeal to me anymore, so that is out. Pharmacy vitamin pills or injections are also not appealing.

Actually, I really do like my doctor and rheumatologist, who actually talk to each other and consult each other over coffee, so hopefully they can solve this puzzle.

I wish I had a dollar for every time a dr. has said to me that I couldn't POSSIBLY have (insert disease name here), and it turned out I had it.

:) Trying to see the humor here.
-Kikil