Sort of diagnosed, needing advice on drug options

[Tryfan]

Hi,  just found this site after a long awaited visit to a Rheumatologist who suspects that I have Sjorgen's.  I have many years of strange symptoms and many visits to different people (dentists for TMJ issues, nerve conduction tests for Thoracic Outlet syndrome and Physios for head and neck problems etc..).  Thought I had MS, then a brain tumour, then anxiety and depression and finally realised it might be AI disease.  Anyway, the Rheumatologist is the best person I have ever seen in the medical profession and he reassured me that it was not all in my head (GP view often).  He gave me info on Sjorgen's and did the Schirmer test which was very abnormal (particularly left).  He wants me to think about Plaquenil and artificial tears but I've now realised I have had a dry mouth (at night in particular) for a long time and wondered what other people thought were the best drugs for this.  I have not been a drug taker at all and have used homeopathy a lot so I am very nervous about Plaquenil but it sounds like it could make a real difference to my quality of life.  Plaquenil experiences please and any other advice welcome...thanks.  By way, having more bloods done to confirm so not intending to start any drugs yet.

[Linda196]

Hello Tryfan, welcome to Sjogren's World.

I've been taking Plaquenil for about 5 years, with no adverse effects and a gradual improvement of all symptoms, including the mouth dryness. Of course this is my personal experience, and we are all completely unique in our journey with SjS.

Clinically ( improvements that can be empirically measured) my blood work has improved over the 5 years to the point that my CRP is nearly normal, down for a reading over 3 times higher than the high normal, and my ESR is half of what it was, but still twice what it should be, but it's better! Measurements of saliva and tear production haven't actually improved, but my mouth and eyes feel better, and I haven't had any abrasions to the cornea for years.

I'm also taking Prednisone and Methotrexate, so I can't credit Plaquenil with all the improvements, but I'm sure it's helped greatly. Like you , I avoided medications, preferred a more natural approach, and continue to have a great relationship with my homeopath/acupuncturist, who is most willing to work with conventional practitioners to provide the best care for her patients, luckily a philosophy my rheumy shares about alternative practitioners.

When researching Plaquenil (and any medication) try to remember that they have to list all possible side effects, but those don't happen to everyone. Many people tolerate Plaquenil very well. Concerns about toxic effects to the retina are mostly a concern for high dosage, but still, it's a good idea to have a baseline check up and twice yearly monitoring by an opthomalogist while taking it.

[Wynter]

I don't take the any of the Plaqeniel type drugs yet, because I haven't been officially diagnosed. But I can say that if you have an extremely dry mouth, meaning your tongue sticks to the roof of your mouth and you constantly have to drink water at night, you should probably ask the doc for a prescription for Salagen or Evoxac.

I know I have had Sjogren's for at least 5 years, but until last year, it wasn't really noticeable to me and because I had never heard of it to put the pieces together. So I went at least 5 years with a somewhat dry mouth, meaning I could still eat whatever I wanted and it didn't hurt or bother me. Now, since my symptoms have progressed, I use Evoxac and it helps some.

If you have any nerve pain, Neorontin or Lyrica work well. I haven't had much side effects from the Neurontin.

[babycakes]

hi there

i was  diagnosed with sjogrens over a year ago after the birth of my son and after years of pain, stiffness, dry mouth itchy eyes and skin problems i took plaquinil after being prescribed by my rhuemie.  I have now been on it for about a year and i would say within 3 months i noticed a difference.  My pain isnt nearly so bad and i dont feel so inflammed?  I do not sweat as much as i used to and always seemed to feel feverish especially at night.  My bloods are almost back to normal ie esr and crp which were both very high before) and the biggest difference is the fatigue.  Before i used to feel dreadful most of the day and could barely function.  Now i am able to look after my little boy and dont feel too bad most of the time.  I do have my bad days as we all day but its so much better.  It has been a positive drug for me but as mentioned by others it doesnt work for everyone.  I havent noticed much difference in my mouth or gritty eyes but i take celluvisc and i am inthe process of being put on pilcarpone for my dry mouth.

good luck annie

[Scottietottie]

Hi Tryfan 

Welcome to Sjogren's world. My GP was an 'its all in your head' bit and I staved off SjS for about 10 years with the aid of a homeopath. Eventually my thyroid swelled up and I crawled back to conventional medicine because I didn't know what was happening with it and my homeopath wasn't a great one for diagnosing - she just treated by symptom.

I've been on Plaquenil for about 5 years now with no adverse affects. There can be side effects but not everyone gets them. If you do take it - build up to your dose slowly - and always with food. Start with 1/2 a pill every second day, then a whole one alternate days, then alternate that with 1/2 a pill inbetween times etc.  Worked for me anyway!  Reduced fatigue and brain fog but did take several months to work fully.

If you start on Plaquenil, get a baseline test from an opthamologist first and arrane to see one every six months. They are the best people to give/prescribe eye drops too. There are different kinds. Preservative free is best but after that it's down to the preference of the individual. Dry mouth overnight is a bit more problematic. There are meds that stuimulate saliva but it depends how dry you are. Sleeping with a humidifier by the bed can help.

Take care - Scottie