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Newbie, scared and lots of questions - please help

Posted , 8 users are following.

Kablois
Kablois

Hello, I would really appreciate some advice from more experienced sufferers. I was diagnosed with Interstitial Cystitis 7 yrs ago and also have Raynaud's and Hashimoto's. Recently, terrible dry mouth and recurring mouth sores and dry eyes have led my doc to send me to a specialist with suspected SS. I don't need to wait for bloodwork to know that this is what I have got unfortunately. My biggest question is this: will the symptoms I currently have that are making my life a misery persist every single day to the same intensity or are there periods of remission or reduced symptoms interspersed with flares? (This is how my Int Cyst functions, so it is managable) I honestly don't know how I am going to be able to continue my job (teacher - so I talk all day and am constantly required to interact) if these symtoms persist without respite. I am plagued with fear about other hidden symptoms I may have and the prospect of living with the very obvious ones I already have. Any info on the general course this illness takes would be much appreciated. Thanks

0 likes, 27 replies

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  • Gail363
    Gail363 Kablois

    Posted

    I'm having similar fears. I was just diagnosed with RA in December 2015 and a month later Sjorgren's. I was on MTX then switched to Arava. I'm using eye drops for my dry eyes.

    My left arm,hand and now face has gone numb and tingling. I was instructed to stop the Arava and I will be starting Enbrel on Friday.

    My Rheumatologist thinks I'm having an RA flare causing swelling and pinching a nerve in my arm,but it doesn't explain the numbness in my face. I was wondering if that might be related to the Sjorgren's or possibly a reaction to the Arava. It's so frustrating trying to sort out all these symptoms. Being a newby to all this my only advice is try to gain as much info as possible from others in the group and stay positive. I believe eventually we will find the right treatment for our particular problems. Just don't give up!!!

    • lily65668
      lily65668 Gail363

      Posted

      Hi Gail, I just looked up Arava. Side-effects do indeed include peripheral numbness and tingling, so that might well be what caused it. It will take a while to subside, even after stopping the medication. However, it's worth mentioning that one of the symptoms of SS itself is peripheral neuropathy. I used to get a lot of tingling, numbness and altered sensation in my hands and feet, ending up with one big toe being completely numb for years though - as mentioned above - the sensation eventually returned against all the odds. I haven't had this particular symptom for about 7-8 years now, but doubtless it will show up again one day. Such is the nature of SS, I'm afraid.

      I strongly suggest you research the side-effects of Enbrel or anything else your doctor prescribes. I'm not saying don't take them. It's just that none of these extremely powerful medications will actually cure RA, they only alleviate the symptoms. In doing so, they may well have other effects on the body, some of them irreversible and worse than the condition for which they were prescribed. A doctor faced with a patient complaining of pain feels obliged to prescribe something. That doesn't mean the patient has to take the medication in order to get better. It's not like taking an antibiotic to cure an infection, or insulin to manage diabetes. RA, like all auto-immune conditions, goes through a natural process of flare-ups and remissions so it will almost certainly improve or clear up completely after a while even without treatment. And it will come back from time to time as well.

      It's always useful to look at how much your pain is disrupting your life or causing disability and weigh that against the possible side-effects of any prescription drugs. Fortunately, in these internet days, this information is available to everyone. Some people opt to take these immuno-suppressive drugs, some don't. It's a personal choice, but it should and can be an informed one.

      And you're quite right - don't give up!cheesygrin

    • Gail363
      Gail363 lily65668

      Posted

      Thank you Lily! This can be really tricky to navigate through. I'm confused as to whether my symptoms are caused from RA SS  or side effects from the meds! I'm currently on prednisone as well so I'm all swollen. But then my Rheumatologist says the swelling cause be caused from the RA flare. Ugh! It's frustrating for sure!
    • lily65668
      lily65668 Gail363

      Posted

      Yes, this is what I mean! And it's why I don't take any meds except thyroxine for my under-active thyroid (another of the joys of SS). Prednisone causes generalised swelling, particularly noticeable in the face, whereas RA causes swelling of the affected joints. But, as I'm sure your doctor has told you, don't stop taking prednisone suddenly (unless you were only given a short course). It needs to be tailed off slowly under medical supervision.

      I always think: my body, my choice!

    • Gail363
      Gail363 lily65668

      Posted

      I didn't know SS caused an under active thyroid as well! Geez...
    • barbara98940
      barbara98940 lily65668

      Posted

      As a solution to dry mouth caused by medication, my dentist recommended that after cleaning teeth, use an alcohol free, anti-bacterial, mouthwash, then spit out, but don't rinse. This mouthwash is intended to help by doing the job that saliva does overnight.
    • Kablois
      Kablois barbara98940

      Posted

      DO you have a particular brand name or active ingredient that is helpful?
    • lily65668
      lily65668 Gail363

      Posted

      Hi Gail,

      Just google Sjogren's - it can affect practically any system in the body! But you don't need to worry unduly. It's a syndrome - i.e. a collection of symptoms - and very few people are unlucky enough to get all of them. I suspect practically everyone on this forum has a different subset.

      A straightforward underactive thyroid is one of the least troublesome symptoms anyway. It is easily treated by popping a thyroxine pill every morning. Would that the other symptoms of SS were that easy to manage...rolleyes

    • barbara98940
      barbara98940 Kablois

      Posted

      My dentist recommended:

      'Colgate FluoriGard'Alcohol Free Mouth Rinse'. As she recommended I buy it elsewhere I don't think she was getting any commission on it. What you could do is look up the ingredients an buy an equivalent one.

  • christine_73623
    christine_73623 Kablois

    Posted

    Hi

     I have been diagnoised with SS for 22 years now but believe i had it 10 years before my diagnoisis My first years withSS were terrible i had no saliva at all, and i mean at all i drank all the time, during this time i suffered from fatique that was terrible, but i was a mum with a baby so it was so awful for her my daughter she sat on my bed literally everyday for two years, I had about 100 ulsers in my mouth so i lost about 6 stone in weight and was so thin it was horrible, My mouth was so sore, this went on for about two years as well, Back when i got SS it was not really heard of and we did not have a computer, i was 31, and now i am 53, After two years slowly but surely my life got back on track, I have travelled alot of the world,  was a coach for my sons rugby league team,,,got a degree and worked in mental health, or thought the last 3 to four years the SS came back, in the finish i had to give up working but that does not bother me now at first it did, but I have a real postive out look on life this SS was not going to rule me I was going to rule it. Now i do what my body lets me, i basically now have my many syptoms, but it helps with a good diet, no sugar no gluten,I still have flares and will need to go to bed, keep a postive outlook i live one day at a time, when i am feeling good i do as much as i can. live in the moment, i do not fear what will happen to me because it is out of my control, and yes i probably have more systoms than a lot of others here,instead of concentrating on syptoms which i do not concentrate on what can help you and your syptoms, find as much information as possible it is not all doom and gloom, and it has not been for me  remaining postive has helped me and has been my greatest tool with SS, one thing that has helped me is not taking medication, some people feel they have too and that is fine for them but not for me. You are just going through the first stages my lasted for two years, heres hoping yours does too

  • jennifer09136
    jennifer09136 Kablois

    Posted

    Sorry you are so distressed about this. I was diagnosed at 28 and am now 60 and have lived a very full and busy life. Yes, yur eyes will have flare-ups, and good days. You need to find an opthalmologist who understands SS and keeps a very close eye on you. You need to experiment with eye drops - all mine are over the counter except when there is an infection. Some will work for a time but then you may need to change. You can get plasma eye drops - you have blood drawn and the plasma is drawn off and made into eye drops just for your use. A good opthalmologist will be familiar. In terms of talking and dry mouth, have a water bottle close by, but my best find is sucking on sugar-free Eclipse mints. Just having 1 in the cheek of my mouth does wonders, and that in turn boosts my confidence.  Also find a super-understanding and competent speacialist dentist.

    There is great life after diagnosis - just take some time to get to know your symptoms and experiment with treatments that suit you. Keep teaching!! 

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