I took hydroxychloriquine for 4 months. Unfortunately, I suffered flu type symptoms. Self help care such as paracetamol, honey and lemon didn't stop me having to visit GP on both occasions. She diagnosed chest, ear and sinus infections requiring antibiotics. Each episode took a month to recover. Even then, the hospital phoned to say I needed more blood tests as my neutrophils were low as were my sodium levels.
I decided to stop the hydroxychloriquine because, like you, I have become quite intolerant to many pharmaceutical drugs. I must emphasise that many other people do very well on hydroxychloriquine.
Sjogrens is often described as the poor relation to RA as research funding and awareness is so much less. This impacts on very few people (Doctors included), actually understanding the implications that sjogrens causes to health decline. As you can imagine then, it becomes very difficult to get a good treatment plan, and to maintain healthy relationships.
As another invisible illness, sjogrens causes sufferers to experience dismissive attitudes and/or the mistaken belief that sjogrens equals dry eyes and dry mouth. It is often much more! I am told, within the next 10 yrs there will be much more awareness.
When I was first diagnosed, I had never heard the term. I struggled with isolation, misunderstanding and lack of empathy. I was feeling so very unwell, my thyroid went haywire, first time since diagnosed hypothyroidism 27 yrs ago. I had always managed well on levothyroxine.
My family, friends and GP, appeared to think my symptoms were ' all in my head'. My dermatologist, looking after my horrific skin rashes, sent off a blood test. I got chemical testing, then found to have significant reactions to some chemicals. And, she referred me to a rheumatologist who diagnosed sjogrens. Sjogrens had been in my blood for 10 yrs, I had never been told. Rheumatologist sent me for bloods and other tests.
Isolated, unwell, I began googling. I was so relieved to find HU. Some link led me to BSSA (British Sjogren Society Association). Like HU, they have been such a support. In fact, today I am attending my 3rd group support meeting with members BSSA.
BSSA have a helpline. If you want more information, just ask.
You may or you may not have sjogrens. It is another autoimmune disease. Gluten free, pacing myself, HU, BSSA, getting referral to specialist hospital, sjogrens friends, reading books have all helped me so much.
Most importantly, I feel safer being understood by medical professionals who know what they are dealing with. Just this week, they sent me for a neck scan. I am told I no longer have a thyroid. Apple, it has shrivelled up! Though, my saliva glands appear ok. I'm sure they will help me deal with making sure I stay as well as I can.
And, yes, I do sip a lot of water! Use eye drops, saliva mouth spray, silk lubricant, and take codeine 8/500 for pain, as I tolerate these products.
BSSA meetings have helped put my marriage back on track. My husband attends the meetings. At last, he is able to understand an illness that I suffer with, but had no understanding of either.
Good luck Yvonne, hope you feel better soon.