PA and Sjogren’s Syndrome

[natcap1]

Hi all,

I was wondering whether anyone in this forum has Sjogren’s Syndrome as well as PA? It looks like I might have both and wanted to find out if the B12 shots help or aggravate SS symptoms?

Many thanks

[Gambit62 Administrator]

search on syndrome threw up a couple of posts you might want to follow up on

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

Have you tried looking to see if there are other forums which deal more directly with sjogren's syndrome and tried asking there?

[natcap1 in reply to Gambit62]

Thanks for this, will take a look.

[Foggyme Administrator]

Hi natcap1. I have pernicious anaemia and also have an underlying autoimmune condition - undifferentiated connective tissue disease - UCTD - which manifests with features of Sjogren's, Lupus and RA.

It's not going to be easy to answer your question because there is significant cross-over and overlap between the symptoms of PA / B12 Deficiency and the symptoms of Sjogren's (or any autoimmune disease).

For me, B12 deficency came first and whilst treatment with injections made a significant difference, some symptoms remained and new ones developed post B12 treatment. Hence more investigations and an eventual additional diagnosis of UCTD (which I suspect had been present and undiagnosed for many years).

But to answer your question B12 injections have certainly not worsened any of my symptoms and those that were originally B12 deficiency related are much better. I know the B12 is doing something because I can tell when I'm 'running out' and need another injection - and I'd feel very ill indeed if I stopped or did not have frequent enough injections.

As to the symptoms that developed later with the UCTD (including sicca) - these probably responded better to steroids and autoimmune suppressants, various eye drops and punctual plugs (though not suggesting that you will need these treatments - depends on how your Sjogren's manifests). And I did find I seemed to need more frequent B12 injections to maintain the same pre-UCTD symptom relief effect - though this might simply have been due to the vageries of B12 defiency rather than as a consequence of the UCTD.

A couple of things that might be of interest:

A research paper that speaks to a connection between PA, Sjogren's and Hashimoto's (very old but interesting nevertheless):

ncbi.nlm.nih.gov/pmc/articl...

Information from the Sjogren's Institute:

sjogrens.org/home/about-sjo...

British Society for Rheumatology:

rheumatology.org.uk

And the Lupus forum here on HU has many very knowledgable members who have Sjgoren's as a primary or secondary condition, so a good place to post your Sjögren's questions:

healthunlocked.com/lupusuk

So...just a thought...note from your previous post that you were having trouble getting B12 injections from your GP. Also note that you have neurogical symptoms - in the UK all the guidelines state that those with neuro symptoms should be prescribed an intensive regime of B12 injections - that is - six loading doses on alternate days and the continue on every other day injections until no further improvement (some times for many months - optimal improvement can take up to two years). This should be prescribed even if your B12 levels are within the 'normal' reference range in order to prevent potentially irreversible neurogical dmage (serum B12 testing is an unreliable marker of B12 deficiency - GP should look at symptoms).

Details about treatment regimes can be found in the BNF (GP will have a copy on desk - and will probably never have heard of the intensive regime so you may have to point it out - second or third paragraph down - they don't usually read that far 🙄).

Here's a link to the BNF:

bnf.nice.org.uk/drug/hydrox...

(BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

Why oralsupplements are not recommended:

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

The importance - and safety - of treating neurogical symptoms with intensive regime of treatment:

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Good luck. Post if you need more help and let us know how you get on 👍.

[natcap1 in reply to Foggyme]

Thanks very much for this Foggyme. Lots to look up which I like, although having more than one auto-immune condition sies give me lots of information to process. It’s all becoming quite a big project!

I see a rheumatologist in just over a week now, so I hope to get to the bottom of things gradually.

[Foggyme Administrator in reply to natcap1]

Hi natcap1. Yes, know what you mean. Autoimmune conditions are very complex and tricky, especially when you have more then one 😖.

Good luck with the rheumatologist. Hope all goes well 👍

[AmyG6500 in reply to natcap1]

Hi natcap1 and Foggyme

My B12 tested as normal, but with a family history of PA I started a therapeutic trial of B12 and now self inject.

I also have positive ENA with anti-RO markers for Lupus or Sjogren’s.

The B12 makes a huge difference to certain symptoms, burning itching feet and legs and balance problems (shoulder bumps etc). I SI every two weeks.

It doesn’t help with the fatigue and as yet I have no sicca symptoms.

B12 won’t hurt you though. And it may help! It took 6 months of alternate day injections to make a difference though!

I’m now also on hydroxychloroquine, 6 months in and no benefit, just a permanently upset tum.

Amy x

[Foggyme Administrator in reply to AmyG6500]

Hi Amy. Yes, finding the right drugs to control symptoms of autoimmune disease can be tricky...and take a long time!

I had a severe allergic reaction to hydroxychloroquine and had to stop it and have now been on aziothioprine (an immunosuppressant drug) for eighteen months - with little good effect. Rheumatologist is quite appaling and not interested in trying to find another treatment that will be more effective, so now looking for referral to a different rheumatologist (Lupus Centre of Excellence).

Also on steroids (which have been effective), but taking these long-term is not good, the ideal being to get onto steroid sparing treatments (as per rheumatology guidelines).

I think one of the problems is that many general rheumatologist don't properly understand connectivity tissue disease or lupus - especially if the presentation is a little out of the ordinary (which many are) 🤔. Hence trying to get to a Lupus Centre of Excellence.

If the hydroxychloroquine is not effective (can take up,to a year to know for sure), might be worth discussing other options with your rheumatologist...and be prepared to ask for a referral for second opinion if you get no joy.

Of course, you may be lucky and have a rather splendid rheumatologist who is going to work with you to get you where you want to be - better and with as few symptoms as possible.

Pleased that the B12 is helping but, as always, rather disgusted that you've had to turn to self-treating - especially with your family history of PA. And a final thought - the upset tum - could be due to gastric issues related PA rather then a side effect of the meds. Have you been referred to a gastroenterologist for Investigations? Also - those with PA or B12 deficiency from other causes often suffer with heliobactor pylori - a gastric bacteria that causes dreadful gastric problems (and B12 deficiency). Worth as,Ing your GP to do a urea breath test to rule it out (go fasting if you're planning to have it done during an appointment).

Good luck and take care. Hope there's more improvement soon. 😉🤞

P.s. LupusUk forum a great place for anyone with autoimmune conditions...lots of very knowledgable and supportive folks there...

healthunlocked.com/lupusuk

[AmyG6500 in reply to Foggyme]

Hi Foggyme

This is so interesting! I actually have in mind to ask for referral to a gastroenterologist. Just getting a GP appointment is such an ordeal I’ve been putting it off, I must stop that and push for an appointment with MY GP! Not just whoever is there on the day.

My rheumatologist varies in his attitude. He tried a steroid shot which made no difference and has told me the next and only other step is methotrexate. I wondered about trying to get to a Lupus specialist too. My symptoms fit Lupus much more than Sjogren’s and I’ve had them since my teens. I’m now 39.

I’m also on strong anti-anxiety meds which could affect my tum. I’ve had 5 referrals for anxiety in my adult life. I suspect it’s all linked as the symptoms started at the same time.

B12 shots every other day settle my tummy down but I hesitate to do that forever. Maybe I should. The hardest thing for me is being ill and having to make all these decisions myself.

Onward and upward!

I hope you get the referral you need!

Amy

[Foggyme Administrator in reply to AmyG6500]

Hi Amy. Suspicious about what your rheumy says...sorting some information for you but currently an infected blob...so sorry for delay...will return and leave here when I crawl out from under quilt 😉👍

[AmyG6500 in reply to Foggyme]

Thanks Foggyme

Look after yourself!

Amy

[AmyG6500 in reply to Foggyme]

Hi Foggyme did you have chance to look out that info you mentioned? Hope you’re ok! Amy 😃

[Foggyme Administrator in reply to AmyG6500]

Hi AmyG6500. Oh...I'm so sorry this has taken so long...and thank you for reminding me 😉😀.

Been decidedly dodgy since Christmas and now fighting to catch up with outstanding response (I get into the forum, and very often have to leave before I'm 'done' - or rather because I'm done-in).

So...where were we...

Rheumatologist 'tried a steroid shot which made no difference and has told me the next and only other step is methotrexate'

Well, quite frankly, that's nonsense. There are many different drugs (DMARD's - immunosuppressant drugs) that can be used to treat autoimmune conditions), methotrexate being only one such!

And different individuals react differently to those drugs - what suits one unique individual with their own unique set of individual symptoms may not suit another. Some with AI disease have to try a whole range or combination of drugs to get their AI conditions under control.

Sounds like your Rheumy is doing what many general rheumatologist do - treat all AI conditions as per rheumatoid arthritis and ignore the complex symptoms and treatment plans that are often required for those who have Lupus, Sjogren's, or connective tissue disease...or cross-over symptoms between them.

Also - many are not aware that unlike RA, other AI conditions can be active...even if the 'usual' tests are coming up 'normal' - active disease does not always show via biomarkers (I.e. in the blood tests).

Here's some information thwt might be useful:

uptodate.com/contents/antin... (Interpreting ANA and autoantibody tests)

rheumatology.org.uk/Knowled... (Rheumatology Society: Guidelines for the Treatment and Diagnosis of Range of Autoimmune Conditions - you can find one for Sjogren’s here too - plus details about the range of potential drug treatments).

academic.oup.com/rheumatolo... (Treatment Guidleines for Lupus)

If you hit a dead end with your rheumatologist (and sounds like you have or will), one option is to discuss this,with your GP and ask for a referral to a Lupus Centre of Excellence. You don't have to have a Lupus disgnosis and they also deal connective tissue disease, Sjogren’s etc.

There are several centres around England and you can find their locations by logging on here:

lupusuk.org

There’s also a LupusUK patient’s forum here on HU (find by searching communities). Lots of information there, folks are really helpful...and very knowledgable about all things autoimmune.

I had real problems with the rheumatologist I was seeing and have just managed to get a referral to one of these centres. So...fingers crossed for us both 🤞.

Apologies again for the dreadful delay...I am ashamed of myself 🤦‍♀️.

Good luck Amy...be really interested to hear how you get on.

👍

[AmyG6500 in reply to Foggyme]

Thanks so much! I’ll keep you posted. Don’t worry about the delay. Keeping up with things is a daily difficulty I understand only too well. I appreciate the info. Look after yourself!

[Foggyme Administrator in reply to AmyG6500]

Thanks AmyG6500. Be really interested to hear how you get on.

You take care too x

[rusholme]

Yes, I have B12 deficiency and recently found out that I have Sjogrens. My symptoms are very mild, so much so I wouldn't have thought to go to the GP. It was picked up by my GP because of an unusual result in a blood test being done for polymyalgia.

I was asked if I have dry eyes - yes, have had dry eyes for years - and did I have a dry mouth - yes, I had always put that down to possible dehydration.

I consider myself lucky as the symptoms are so mild.