Suffering with Sjogrens

You could try giving the saliva glands a rest from medication.  Drink plenty of plain water preferably warm and suck sugar free boiled sweets, there are lots of flavours, to stimulate the saliva.  

I do all the time but thanks for the suggestion I never go anywhere without water and sweets I don't know if I will be allowed to mention the brand, they are Swiss available in all supermarkets and start with R! 

I can deal with the dryness , but I am always tired :-((

Hi Katalin, Have you had a blood test for thyroid function. Sjogren's often attacks the thyroid. Symptoms are tiredness, sometimes with hair loss, constipation, weight gain, dry skin and feeling the cold. However, not everyone gets all the symptoms, so it's well worth insisting on a blood test even if you don't have all of them. It should be routine, but I know a lot of UK doctors don't bother to do it. If you do have an underactive thyroid, it's easily managed by popping a single pill of thyroxine every morning.

Yes, I have blood test every 6 months , but I going to ask her make sure we check the thyroid also . We did a few times because I do have a hair loss also 3-4 times a year... Thanks :-)

I do take B12 also

Bear in mind also that doctors may have different criteria for diagnosing hypothyroidism. They fall into two camps. Some insist that T4 levels have to be below minimum limit (this is the main thyroid hormone). However, others will make a diagnosis if T4 is within limits but TSH is high. This is thyroid stimulating hormone, secreted by the pituitary, which signals the thyroid to secrete its own hormones. If TSH is very high, even with a normal T4, many doctors take this as a sign that the thyroid is struggling to produce enough hormone and needs a little help. Indeed many patients experience hypothyroid symptoms with a normal T4 but high TSH. I was one of them. I suffered increasing tiredness, hair loss and constipation for three years before I could convince my doctor to look at this again.

She eventually agreed to a specialist urine test (which I know isn't available in every country as my specimen had to be sent across the border). This came back with a diagnosis of "covert hypothyroidism". It was only then that she agreed to refer me to a specialist, who did the radio-active iodine uptake test (just to make sure there wasn't anything sinister going on) then prescribed a low-ish dose of thyroxine. I didn't regrow the hair I'd already lost - which is often the case - but it didn't get any worse after that. The chronic constipation was also reversed and I started to feel less tired.

If you're living in a country where you can get your own copy of blood results, don't forget to ask for this. I always ask and they only charge me a couple of euros for it. They always show the normal range for everything, as well as your levels, so you can monitor it yourself without having to take your doctor's word for it.

Thank you so much , I will look my blood test 😘

Hi Sherry, my name is Jessie, and I am 22 yrs old, and was diagnosed at age 20. Because I'm so young and my mom has lupus, they think Sjogrens is just the start for me, but I work hard to keep a positive attitude. I liked your comment and hope you are doing well. Prayer is always the best answer 😃 -Philippians 4:6, 7

Hi Gayle, I suspect you're talking about Sea Buckthorn oil as that has masses of omega 7 in it. I take it three months on, three months off and have found it does make a slight difference to my dry eyes and more of a difference to the painful tendinitis that is part of Sjogren's for me. I don't find it all that expensive. I don't know if you live in the UK, but if you do, H&B (I hesitate to advertise on here) are currently doing a buy-one-get-one-half-price on their entire range. Their own brand sea buckthorn oil only costs around £20 for 60 caps (a month's supply) at the normal rate. They do another brand, but I think that's more expensive. I know this as I've just this minute got back from a trip to the UK, where I stocked up!

It certainly isn't a miracle cure, though given your history, I suspect you're well aware there's no such thing anyway. However, I do find it makes a difference over time. It doesn't say so on the H&B brand, but the usual recommendation is to take four capsules a day for the first month, then go back to two per day.

My only concern about it is that we're not used to consuming large amounts of omega 7 in our diets, so I'm wondering whether our metabolism is equipped to handle it. That's why I take it three months on, three off. However, I think that if it was going to cause a problem, it would show up in the liver enzymes. The last time I had a blood test, at the end of a three-month period on the oil, my liver enzymes were actually better than they'd been for years, though that might have been a coincidence, fo course.

I know it hasn't worked for everyone on this forum, but it's always worth a try. But you'll need to give it three months before it's likely to have any effect. You might find an earlier post from me on these boards saying it had given me diarrhoea, but that turned out not to be true. I'd started taking another supplement (ubiquinol for my blood pressure) four or five months before the sea buckthorn oil, and the side-effects had taken months to kick in. I therefore wrongly incriminated the sea buckthorn. Once I stopped the ubiquinol, the diarrhoea stopped.

As far as I know, sea buckthorn oil doesn't cause any side-effects.

Thanks for the information! That's very helpful. I wonder if anyone has had a problem taking azithiopr. I took my first pill yesterday and had to have an ambulance take me to the ER. Hours of throwing up - at my eye doctos office.

I am different to most of you - had Sjogren's 45 years!  Diagnosed in 1985, dated it back to 1970, am now 71.  Yes, gayle 19455.  Back in 1989 I was given azithioprin(e?) and had a bad fever for a couple of days.  I was a very slow learner and it took me two more episodes of tablets then fever for the penny to drop!  I was taking an antidepressant also at the time (Tolvon); it seemed that my reaction to one caused a similar reaction to the other as I couldn't take either after.  I didn't have the fever immediately; it took 2 or 3 weeks, presumably a reaction to a buildup rather than a single dose, which at least partly explains my slowness in realising the cause of the fever.  We are probably a bit of a rarity in this regard. 

Azathropine is I'm afraid not a drug that my rheumatlogist recommends. I have never taken it personally but I know some have, it's a bit like Jeyes fluid in a pill form, it can in some drain almost all the white cells out of your body. I'm sure it works for some, but it's certainly not one I would ever take but I have had the misfortune to be diagnosed with SS not 

Lupus and SS. My ANA was homogenous not speckled. So in effect I had Lupus then Sjögren's. 

I love your turn of phrase Pam - Jeyes fluid in a pill indeed!

I'd never heard of azathioprine, had to look it up. I see the brand name is Imuran. I've a feeling at least one person on these boards has said they're taking this. Oh well, whatever works...

Thanks to you all. I'm now afraid to take anything...was terrible after taking the the drug. My bidy feels as if has dried up and itches all the time. I was an esythetician before I retired and yet cannot find anything that helps the dryness. I feel sick all the time. Is this normal?

Gayle, do you live in the UK? If so you need an urgent appointment with your GP. If you don't your primary healthcare provider.  Azathropine is terrible. You do need to see someone ASAP if this goes on. I know it's used in autoimmune diseases but as I said it can have very dramatic side effects and is like bleach! It seems to knock out all your white blood cells. If you feel worse go back to your ER and tell the doctor who prescribed it it's a really nasty pill. 

 

Thanks Pam. I live in Seattle USA. Thank God for Medicare. I won't take this drug again. But what does help? My Neurologist has thought for years I have an autoimmune disease but couldn't pinpoint it. I have had fibromyalgia for many years but this dryness and sick feeling is awful. I'll see my Rheumatologist next week and if he doesnt come up with something better I'll find anther one. It's interesting find out how hard we've all had finding the right doctors. Thank you much!

Well Hydroxy or in the USA Plaquinel is the drug of choice. Failing that and depending upon which autoimmune diseases you have I personally would go for Methotrexate by injection as it can irritate the stomach. I know Prof G. Hughes who was the pioneer of Lupus and a world authority on Lupus and APS Hughes Syndrome thinks Plaquinel is best. 

Thank you Pam. I will talk with my doctor now that I have this info.

Hi Gayle, I'm actually a former nurse, albeit from way back when (SRN in the old UK system). I don't know anything specific about azathioprine as we didn't really do anything much to treat autoimmune conditions back in the day. However, I am able to understand medical and research articles. I've just done a bit of reading on the drug (which does indeed sound rather nasty) and I can't find anything that says it would be dangerous to stop taking it. Rather the opposite - some sites acknowledge that it causes severe side-effects and actually advise stopping the drug immediately if this happens. It clearly wouldn't do any harm just to suspend it for the time being.

However, what most sites warn is that the effects continue for some time after stopping, so you shouldn't expect to feel better straight away. As Pam says, you need to get back asap to whoever prescribed the drug and discuss this with them.

Going back to my comments about sea buckthorn oil, I wouldn't recommend taking it, or any supplements outside of the well-known vitamins etc., in conjunction with any immunosuppressant drug. It wasn't clear that you'd re-started azathioprine at the time of my post. I'm only able to experiment with all kinds of supplements because I'm not actually on any medications for Sjogren's. We all make our own choices as to which route we go.

Lily I can assure you that Azaropine is NOT a drug many consultants be they for Lupus or Sjögren's, remember my Consultant is the president of the BSSA the British Charity for Sjögren's would never advise for a patient as I have said it can and does wipe out almost all the white cells in a patient. Obviously not all patients but I am told that a lady who was put on Azathropine ended up in a top London hospital due to Azathropine. She was a member of staff at my GP practice. While I'm sure your knowledge is very good I can assure you that my GP and my Consultant do NOT feel this is a good drug to use for SS or Lupus. 

Pam, I don't think you read my post correctly. I wasn't expressing any opinion on whether or not azathioprine was a suitable drug. (In fact, I'm personally strongly opposed to the idea of taking any immunosuppresants!)

What my post said was that I'd done some research and there was no indication that suddenly stopping the drug was dangerous.

I reiterate what I said. If Gayle is worried about the side-effects of this drug she should stop taking it immediately and get back to the doctor who prescribed it.

I know your view Lily but if someone has either Lupus or Sjögren's it is important to take the advice of their GP or in the USA primary heathcare provider. All I know about Azothropine is it can be used in both Lupus and SS but it is like Jeyes fluid in a pill. A friend of mine who,has Lupus was put on it and nearly died. I was put on Leflunomide and twice it looked as if I had Leukeamia. I do have Lupus as well as Sjögren's but as you know many find drug reactions, some can me life threatening. Most people with severe Lupus have no quality of life and as my GP has with a diagnosis of SS turned me into a cripple as I have Ehlers-Danlos as well as Lupus and Sjögren's I'm no fan of a drug that could kill me. I do,understand you wish to cure yourself with herbal remedies but we are all different and no herbal remedies will cure abnormal collagen sadly. 

Thanks Lily. I have been being treated for many years for cervical dystonia and essential tremor and my neurologist has tried many medications to help which i couldn't take but I never had a strong reaction like this time to anything else. Its good to know others don't like it and that it's ok to. Just stop it. It's too bad we all have mulltiple problems...that seems to be because we are female!

Thanks Pam. I saw my doctor yesterday and all he had to say was " I'm sorry I posioned you" then prescribed a drug for dry mouth. I think you can get drugs cheaper in the UK but it was over $100 here. And last night I had horrible psin in my right shoulder..woke up at 2 am with it throbbing. Is this the kind of pain i can expect now.

Hi Lily, I am 60 and I'm newly diagnosed with Sjogrens and want

to say how encouraged I am by your posts. Its wonderful to know that some people manage to stay relativley well for long periods despite their diagnosis. Especially those that are "less young " I've read all the scarey stuff so I know what to keep an eye out for but luckily mine is mild at the moment and I'm on the hunt for any tips that will help to keep it that way. Looking back its been going on for many years in minor ways but not in a way to promt this diagnosis until a remarkably high ANA blood test result. Interstingly as a coeliac, hypothyroid with some osteoarthritis I'm already gluten free, low carb, eating good fats, proteins, veg, vitamins, omegas and so forth. Maybe my current (over last 9 years) healthy lifestyle has delayed tangible symptoms? I'm wondering if even more omegas and avoiding anything that is reputedly inflamatory will help more. Any ideas from anyone will be appreciated.

I like your name! That's a good omen for a start - shows you have the right attitude!

As you've probably seen above, I added omega 7 to my diet (in the form of sea buckthorn oil capsules) about a year ago. It does seem to have made a very small improvement to my dry eyes - which weren't all that bad anyway - but the biggest improvement has been in the painful tendinitis in my arms I've been suffering from for the past year or so. However, you've probably also seen my caveat that we eat very little omega 7 oils in our diet, so we may not have the wherewithal to metabolise it. This is why I only take it for three months on, three off. I suspect that if it was going to cause damage this would show up first in the liver. However, I have to say that a blood test earlier this year, at the end of a three-month period on the oil, actually showed better liver enzyme results than I've had for years!

I've also taken cod liver oil capsules every day for 35 years now, as well as eating oily fish a couple of times a week and a fair amount of full-fat dairy. No idea whether this has helped but I wouldn't risk stopping or reducing it now.

I think Sjogren's is like any other chronic condition, in that once you get used to it you learn to listen to your body, which will guide you towards the foods you should be eating, and away from the ones to avoid.

As regards the scary stuff, don't forget that posters on forums dealing with any medical condition tend to be a self-selecting group. By that I mean that forums are bound to attract people who have the severest form of the disease. I'm actually one of the exceptions on this particular forum, as I'm not too badly affected, but most people with my level of symptoms probably wouldn't even bother to go on a forum. This can give the impression that almost everyone with Sjogren's is very badly affected, which really isn't the case. The foregoing is in no way a criticism of, or lack of sympathy for, those who are suffering badly. But bear in mind that the posters on here are mainly from the most severe tip of the iceberg.