Thursday of last week I had an appointment with a Rheumy. He is someone I did see several years ago with reference to OA. Haven't been back in about two years.
My Primary diagnosed me with SS in April after blood work. My medical records were forwarded to the Rheumy. He tells me the only positive test for SS is a lip biopsy, and my blood work only revealed a slightly elevated level for RA. Therefore he would not give me a positive diagnoses for SS.
He prescribed a six day course of Prednisone. He wants me to write down how I am feeling on the Prednisone. He explained this is just temporary. I've been on it for three days, and all of my joint and muscle pain is practically gone.
He also gave me two scripts for dry mouth. CeVimeline, and Pilocarpene. He recommends trying them to see which one might help. He said they can have bad digestive side effects. Which can be temporary if I can work through it. He said some patients find them to be helpful, others say there is no improvement. I haven't tried them yet.
I go back in two months.
Does he sound like he is on the right track? Has anyone taken either of these dry mouth meds?
I havent tried either one. I would write every thing going on with me down and ask for the blood work to be redone when i go back. If you are not comfortable with the doctor is their another one in your area you could see?
Good to hear from you! I haven't used these meds either, but am interested in how they work for you.
My GP had initially thought I had RA, but it turned out I have Psoriatic Arthritis, without the Psoriasis. My GP diagnosed Sjogren's and my Rheum confirmed that and the Raynaud's, but NO biopsies were done.
It would be worth it to find out if it is OA or RA, as RA can be slowed down! Sometimes you have to give them a chance to see you several times to determine exactly what you do have.
Hope you can get some solid answers and some solutions!
What bloodwork did your primary to that led your primary to Sjogren’s? I disagree with the rheumatologist when he said that the only positive test for Sjogren’s is a lip biopsy. There are many people including me who have been diagnosed based on blood work. The fact that you are suffering from dry mouth sounds like there is some basis for a Sjogren’s diagnosis. In fact I do know people with negative labs who are still treated based on symptoms. It’s a good idea to keep a symptom diary that you can bring with you to your next appt. I know that it took years of complaints of fatigue and joint pain before I was finally diagnosed. It sounds like a great idea to have the md redo your labs for confirmation.
I take pilocarpine for dry mouth and it works for me. Some people complain that it doesn’t work at all and some say it gives too much moisture. I am one of those extra cautious people who cut the tablet in half just to see id there going to be a reaction. I have had no side effects.
I take Pilocarpine 3 times a day. I get about one hour of good saliva after taking one. (I want to run around licking envelopes just because I CAN!!! LOL) I don't feel it does much after that but it must because I'm down from drinking 5-6 liters of water a day to 2-3.
I have had extensive blood work done and everything has come back negative. I had a lip biopsy and my lip is still numb after a few months. It also came back negative. I seem to be one of those people that display all the symptoms but always have negative test results. I've been put on Celebrex and Gabapentin and that combo has worked very well for me. I was also prescribed Prilosec to be taken once a day to prevent gut rot and so far I've had no stomach problems.
It always seems as if every doctor wants to pass the hat when it comes to Sjogrens. Hang in there. My thoughts are with you.
Always helping me to feel a little better. I see where this is going to be a long road, and I will have to take responsibility and get myself more educated. This SS is not just a little annoyance, it can be quite brutal.
The Rheumy I am seeing is considered among the "Top Docs" in the southwest Florida area. Who knows! This is a starting point. I kind of trust the feedback from you guys more.
I can't stress enough how much it means to have a knowledgeable group such as you all to fall back on.
Cassi, glad to hear that you take pilocarpene with little discomfort. I have intestinal issues that are under control, and I don't want a flare up. I too will start out with 1/2 tab to see the reaction.
Thanks, Connie
Cassi440 said:
What bloodwork did your primary to that led your primary to Sjogren's? I disagree with the rheumatologist when he said that the only positive test for Sjogren's is a lip biopsy. There are many people including me who have been diagnosed based on blood work. The fact that you are suffering from dry mouth sounds like there is some basis for a Sjogren's diagnosis. In fact I do know people with negative labs who are still treated based on symptoms. It's a good idea to keep a symptom diary that you can bring with you to your next appt. I know that it took years of complaints of fatigue and joint pain before I was finally diagnosed. It sounds like a great idea to have the md redo your labs for confirmation.
I take pilocarpine for dry mouth and it works for me. Some people complain that it doesn't work at all and some say it gives too much moisture. I am one of those extra cautious people who cut the tablet in half just to see id there going to be a reaction. I have had no side effects.
Hi there
Sjogren’s is brutal! Don’t let anyone convince you that it is a “minor annoyance”. It’s very difficult to find a good GP and a good rheumatologist and I count my blessings for mine. My rheumy said to me that blood tests can be unreliable and she mainly goes by what the patient tells her regarding their symptoms. She prescribed me pilocarpine and it didn’t work very well, so she prescribed excovac (sp?) and it works so much better.
What I’m basically saying is don’t give up, and if you feel that this doctor isn’t caring for all of your needs, then don’t be afraid to try a few others. Hang in there.
I am using the cevimeline for the dry mouth it has help a lot, but Iam very nauseated all day I dont know if it is the medicine or is something else that is causing the nausea, but once I started on it I starting feeling nausea. I hope it helps! It is a horrible disease that everyday is different. Some days are better than others.
Thanks for that info. Have you been on it long? My doc said to try and persevere, and side effects might go away. I haven't tried it yet. But this dry mouth is killing me. As you well know.
I know what you mean. My dr is not good. I really need a new one.
Hollydoodle said:
Hi there Sjogren's is brutal! Don't let anyone convince you that it is a "minor annoyance". It's very difficult to find a good GP and a good rheumatologist and I count my blessings for mine. My rheumy said to me that blood tests can be unreliable and she mainly goes by what the patient tells her regarding their symptoms. She prescribed me pilocarpine and it didn't work very well, so she prescribed excovac (sp?) and it works so much better. What I'm basically saying is don't give up, and if you feel that this doctor isn't caring for all of your needs, then don't be afraid to try a few others. Hang in there.
Thanks for your feedback. I've been taking pilocarpine now for over a week. I don't see much in the way of improvement. Perhaps it needs more time. I will ask about excovac.
You are right, Sjogren's is brutal. Having this group to go to, and gleaning everyone's feedback has been a comfort.
Wow! You certainly know quite a lot! While on prednisone for 6 days, I gradually began to feel good. All joint pain disappeared, the constant stuffy nose, and thick mucus in my throat was gone. (I don't know if this is related to SS) I've read, where with SS, your saliva does become thick in your throat. I also had energy. I'm generally fatigued.
Of course it was all short lived, as every symptom is back. I return to my Rheumy Oct. 30th.