...and now Sjogrens

[PamelaHelen]

Hi,
as the topic suggests, I am awaiting formal diagnosis to confirm I have Sjogrens. I am sure i do and think i have had this for some years, which i have learned now, would not be unusual.
Now 51, I was diagnosed with Hyperthyroidism at 17, had surgery at 21 and am now hypo; diagnosed with Rheumatoid Arthritis at 25 and have had various other complications like Reynauds. I could not continue working due to the RA following birth of my daughter when i was 33. Studied and earned a degree in Social Science in my forties and returned to work with a Non-Govt.-Organisation after being approved to receive Actemra (thanking God I live in Australia as would not be able to afford in US). Actemra (with nearly every other drug available) finally controlled symptoms enough for me to work part time for past three years.
But things have been getting harder and harder over past months without me being able to pinpoint what was happening. So many things coinciding i just got used to thinking - oh that symptom is aging ...that symptom is the RA etc etc... it took a recurrent bout of conjunctivitis not responding properly along with extreme fatigue and brain fog for me to start googling. I was astounded to find this syndrome and, more importantly, the information written by people who live with this, to inform me. It was like reading a checklist of symptoms ...tick, tick, tick, tick.
Ridiculously, i had gotten so good at attributing symptoms to other things that i even discounted a very recent call from my long-time Rheumy asking if i was ok (as bloods were consistently showing otherwise) as just nothing to worry about. I have been to my GP, had bloods and re-contacted my Rhuemy for another appt.
I guess i just wanted to say thankyou to all the people who have taken the time out to reach out and inform others - most medical information I read seemed to downplay the most frustrating and isolating symptoms of this syndrome.
I look forward to much enlightening reading. Thank god I am not alone anymore.

[finallyadx]

PamelaHelen - welcome to the board.  You have come to the right place.  Folks here are informative, supportive and so very kind.

Please keep us posted as you find out the results of the bloodwork.

Sending positive thoughts your way.

[LucyD]

PamelaHelen,
Welcome. I am sorry you also probably share this disease, but so glad you found this forum. I am very grateful to everyone here. As you said, such helpful and excellent information, along with the most beautiful support.
LucyD

[PamelaHelen]

Thank you finallyadx and LucyD for your replies.
I am pretty scared right now - thought last three years i had some options given back being able to work again and now wondering if I will be able to keep going - what the impact on my relationship will be and how we will manage financially. I know seems to be putting a lot of what ifs out there and normally feel really positive and count my blessings but am really feeling pretty overwhelmed right now.
I know I will get past this one day at a time just like every other situation I have faced and like every other person on here; but guess this is my unburdening myself of the secret fears I don't feel i can share with others in my life yet.

[eye2dry]

 hello PamelaHelen.

welcome to this board.

I have your same health problems.

Mine occurred in a different order.

Sjogrens 1st, then RA and then hypothyroid

I work part-time as well.

I take methotrexate.....,plaquenil....... levothyroxine.....Cymbalata......

and many supplements/vitamins.

Will you be taking additional medications for the sjogrens?


eye2dry

[PamelaHelen]

Hi eye2dry,

I don't know as yet as i already take some such as prednisolone that Ithnk have helped control some symptoms.  I have had Plaquenil in the past for the RA but as I recall I had some unpleasant side effects. It's wait and see at this stage. I will post any further meds for information.
Does anyone else have freezing cold feet but sweat from face and head at the slightest hint of heat? If only my feet could cool my head...

[Carolina]

Hello Helen,

These conditions tend to cluster together and to proliferate.  The treatments for many are similar, and getting a new diagnosis doesn't always mean more symptoms tho' there may be more systems and organs involved.

That means another set of 'ologists' in some cases, such as pulmonologists if your lungs are involved, or gastroenterologists for gastric in involvement....etc.

I have had a urologist for my Interstitial Cystitis, but I no longer need one, as I no longer have UTIs because I take D-Mannose.

Welcome!

We have a lot of ideas and ways to support you.

Sjogren's, actually for MOST people is just a bit of dryness and that's all thank you very much.

However, for the 'fortunate few' it is a total body, systemic thing.  Perhaps not in and of itself, but as part of a host of conditions.

Do NOT WORRY.  Relax, take deep breaths and tell us what you need.

Most of us just need a place to talk, to share, to get ideas, to vent, and to realize that WE ARE NOT ALONE.

That is this is no fun some times, but we can learn to find hope and move towards the future.

I really believe that we are each other's best allies.

Hugs,  Elaine

[PamelaHelen]

Thanks Carolina. I am taking deep breaths as i type. I have a few things going on for some time I have not cared to share with my Rhuemy as easier to put all pain and discomfort to RA, but will share now.
Does muscle pain, toe and leg cramps at night (my thryroid levels are not low) and hand tingling, all relate to Sjogrens? I have had RA associated with my lungs as well but is this also associated with Sjogrens?
Many thanks for the support.

[anita]

As others have said, Welcome!!

BY the sound of your long history/story, you obviously know how the medical system works...it takes time for tests, then more tests, then wait more time for results.  At some point it have another new diagnosis and new set pf plans, treatments, and maybe new doctors to see.  It's a way of life for some here.  But don't worry, we are here to help you through it.  Just take one step at a time.

With the several conditions you have, it can be hard to determine which symptoms comes from which disease/syndrome.  The cramping:    you may not be getting enough magnesium or potassium or they may be just from not drinking enough water  In others words, not everything is tied back to Sjogren;s or RA...some of our symptoms are for NO reason at all. 

But water (lack of), magnesium and potassium are the top three.  Hopefully others will pipe in with a few other helpful hint for cramps.  Some swear by putting a bar of soap under the covers of your bed.  Not that I know the mechanics of this, but it can't hurt to try it.

The muscle pain may be related to the leg cramps and go away when you resolve the cramps.  Hand tingling is more neuro...do you have any burning sensations also or numbness?

We are here to help.  We will try not to overwhelm you, but just remember to breathe as Elaine said...and you'll be fine.

[PamelaHelen]

Hi Anita,

As you have said it can be hard to know what is due to what and yes, some things just are, for no other sinister reason. I am breathing .  Yes, it seems more and more tests jsut to wait and undergo further tests. I am very very fortunate that my RA has responded well to Actemra, and was interested to find a reference to a study under way gauging effectiveness with Sjogrens when i searched...will have to wait and see i guess. 
I do get some burning sensation in my hands.
My Rhuemy just called me back and he was fairly dismissive of the Sjogrens ...was mostly concerned that my bloods did not exempt me from qualifying for the Actemera. I understand this to a degree as my life has changed for the better since this biological - and as i failed three others prior to this. In Australia you can only get this type of med on Pharmaceutical Benefits Scheme (Govt subsidised) if the RA is unable to be controlled with a combination of other meds (methotrexate and Arava or similar) and you get to try five types before self funding and must have positive blood results to stay eligible (still good compared to some countries as I understand).
So, i was understanding but under-whelmed by his response - he said well no doubt you are having a flare but the good thing is it won't affect your eligibility for Actemra. And he IS right of course; I do really know that yet somehow wanted more from him.
Oh well.
Thank you all for your responses. It does help to know people understand.

[cccourt1942]

Pam/Helen-I could have written your early part of your first post.  "it's this," no...  "it's that"...for nearly 30 years.   I did/do NOT have RA.  Never thought this could be a good thing for someone...but for you, it made you proactive.  It sounds as if you have carved out a wonderful life in spite of your medical conditions.  You go girl!  I believe you've been thru the worst. 

Welcome to the forum....and sorry you had to find it as well!

[irish]

Interestly enough most Rheumatoid arthritis patients are also affected by Sjogrens. Also, people with hypothyroid  or thyroid disease in general often have Sjogrens. Have you had your TPO or thyroperoxidase levels checked. If positive of elevated this indicates Hashimotos which is autoimmune thyroid disease. This is very commono and can cause a lot of symptoms. When my thyroid gets out of whack I can also get lots of aching joints. Ain't autoimmune disease fun?

Welcome and know that there are loads of great people on this site. Irish

[PamelaHelen]

Hi cccourt1942 and thank you so much for the kind words. Not so sure about being proactive all the time since nearly every poster here has an amazing amount of knowledge gathered over their own journey. Maybe I've more been in denial until everything comes crashing down periodically

irish I have no idea about my TPO or thyroperoxidase levels - a quick google with limited understanding only leaves me wondering if my results would show this as i began my journey being diagnosed as Hyper active and only  became hypo following surgery to remove most of the thyroid gland. Interestingly, my sister was diagnosed severely hypo about five years ago, around her menopause time, and my daughter (18) has been diagnosed hypo for last four years. Neither have been Hyper at any stage. Weird.

I am beginning to realise how many autoimmune disorders are co-occurring so might keep my blinkers off now.

Thanks again for your welcomes. Pam

[irish]

You can have elevated TPO with no thyroid symptoms or with hyper or hypothyroid issues. It is a very fickle issue. According to my immunologist you can start out with thyroid disease (either hyper or hypo) and no elevated TPO. As the years progress the body changes and hyper can change to hypo due to interventions, etc and no matter what you have for thyroid issues the TPO can convert to positive and elevated.

I was told by this doc that it is not a question of "if" a person will get Hashimotos, but a question of "when". I have elevated TPO and also have a son with extremely high TPO who was just diagosed with Hashimotos encephalopathy and he is on 20 mgm of Methotrexate a week and slowly improving. They suspect that this is sort of a vasculitis of the smaller vessels of the brain. It results to lots of weird symptoms in including stroke like symptoms and poor concentration plus exhaustion that is horrible.

Sometimes I wonder if all us Sjoggies with the brain fog have elevated antithyroperoxidase levels that we don't know about and this is causing some of the brain fog that we suffer from. Hard to know unless we bug the docs to check this bloodworm. Remember, don't need to have active thyroid disease, but it probably will show up later if in the absense of disease the TPO is positive. Just a new disease syndrome and not as much known yet. My immunologist see him and he had no qualms about the diagnosis and starting him on medication. I think if he had not been diagnosed he would probably have been dead in 5 years as his symptoms were increasing and getting more serious. Very strange thing indeed. Good luck. Irish

[PamelaHelen]

Thanks Irish.
It must have been very scary for you and your son and thank goodness you found a diagnosis - not that you would have wanted what you found; but undoubtedly better than not. Hope he is doing well now.
I think i will go to Dr for referral some other kind of ologist for me and encourage my daughter also - better we become more informed I think and especially better she takes this seriously. I see also that our major hospital has an endocrine in addition to an Immunology unit. Any views on whether an Endocrinologist or Immunologist would be better?
Pam