New with questions

[Christie]

Hello,

I was recently diagnosed with Sjogren's and Fibromyalgia. I was referred to a Rheumatologist about  the Sjogren's because I have a lot of the symptoms but a couple of the blood tests came back negative. I  had read that you can have it even if the tests are negative. So I asked for a referral for the Rheumatologists opinion and possible lip biopsy. Anyways, I finally got my referral. He asked me a bunch of questions, looked at my skin, mouth and eyes, looked at my other test results (ANA) Positive, TPO elevated do to Hashimoto's) and said that I do indeed have Sjogren's and said 25-60% of people test negative on lab work even though they do have Sjogren's and went on to say that's why he goes by symptoms. He said there's no need to do a lip biopsy if the patient has the symptoms, why put them through that? I guess it's not all that pleasant?He was very nice so I was relieved because I was worried because of the negative blood work that he'd think I was a hypochondriac or something.

Then he did I guess what is the trigger point exam and it hurt like heck and asked me some more questions, asked me to walk, examined my feet and hand joints, and neck movements and said I also have Fibromyalgia. He said I know you didn't come here for that but you do have it. Anyways he went on to explain that I need to start exercising 5 days a week (too exhausted and in pain)and then said that the medicine that he would prescribe for Fibromyalgia to help sleep and with pain causes more dryness and that's would be no good for the Sjogren's and the medication he could give me for the Sjogren's causes ALOT of excess sweating, and doesn't help with the eyes at all anyways just the mouth (my main dryness is my eyes) so he didn't think I'd want that. He said I could try it if I wanted. I didn't' get the prescription since it didn't sound too great and I live where it gets to be 100 degrees and don't need increased sweating.UGH!

So I was wondering do any of you have Fibromyalgia on top of the Sjogren's? What medications do you take for the pain and continual waking during the night? Also are there any other medications that help with fatigue and dryness of the eyes.I already use Restasis and have lower plugs in my eye with no relief. My dryness is prety severe. Schirmer's is 0 in the right eye and 2 in the left.

Thanks so much,
Christie

[Scottietottie]

Hi Christie 

Welcome to Sjogren's world.  You sound like you have a good rheumy there. It's good to here there are rheumy's out there who will dx on symptoms rather than insisting on positive bloodwork.

I've read in here that its possible to have upper plugs as well as lower plugs which can help dry eyes. What drops do you use apart from Restasis? It's my understanding that it has to be used alongside artificial tears. Personally I like celluvisc but what suits one sjoggie doesn't always suit another. It's trial and error!

Did your rheumy offer you Plaquenil? It's often offered shortly after dx because its meant to slow down the progress of the disease. (Slow as that is) A lot of people find it helps. It takes a while to work - often up to six months. It lessens the pain for some. I found it made me less fatigued and less brain fogged.

Do you take thyroxine?  I have Hashimotos and if I'm undermedicated I hurt a lot more than if I'm not. I realise that there are different stages of Hashimotos and you may not need thyroxine yet.

I hope you find the site useful.

Take care - Scottie 

[Patze]

Hi Christie,

Let me also welcome you to the SJS World!  Please do look around as there are tons of topics that you might find interesting.  Don't be shy, if you can't find the answer you're looking for in the forum, please do ask as there is usually someone about.  Can't guarantee you the answer you want, but there are oodles of really great members that'll pass on what they've learned.

Like you and Scottie, I too have Hashimoto's, and fibro.  I was diagnosed first with Hashimoto's, then SJS/SICCA (long story), and fibro among other things and the hits keep on coming.

I take Plaquenil for the SICCA, Restasis & fish oil for the dry eye, Levoxyl for the Hashimoto's, Flexeril & Lyrica for the fibro among others.  I use the Lyrica and Flexeril mainly at night to help sleep, plus a pain killer - sometimes this combo helps and I can sleep 3/4 hours before waking, other times, well maybe 15-20 minutes.  Like I told the ENT, I'm starting to feel like a walking drug store.  Ugh.

Again, welcome and hang in there.

Take care -

Patze

[Linda196]

Hello and welcome, Christie.

Please, when you have the chance, thank your rheumy for his approach if you haven't' already...a rheumy who treats and diagnoses based on symptoms, and doesn't rely on numbers on paper, is a prize!

I, too, am a bit surprised he didn't suggest Plaquenil, but he's right about the conflicting side effects of the treatments for fibro and SjS. The various OTC drops and supplements like fish oils can be very beneficial, but as already said, very individual, so trial and error is in order, and always let your doctor know of any OTC treatments you plan to try.

[Christie]

Hello Scottie,

I use a lot of other unpreserved drops along with the Restasis all days long and genteal gel at night before bed. I prefer Theratears for the day.I have tried dozens of drops but then come back to Theratears in the individual vials.

No, the Doctor didn't offer me anything medication except the one he said would cause excess sweating but never gave me the name of it. He only told me a chart with some stretches because I have daily headaches and and neck, and shoulder pain.The stretches haven't helped. He told me to exercise 5 days a week for 30 minutes which I haven't done. I work all day and with the almost hour commute, I am just too drained.

Yes, you can also get upper plugs and I go back to the ophthalmologist on June 2nd for a follow-up and will be asking him if that's an option.He didn't want to put in the lower plugs though because he said he doesn't like to put plugs in unless someones much older. Don't know why?But he said with the Restasis not helping and all my  problems he said that's probably the best way to go now.

I take Levoxyl for the Hashimoto's. Does your medication make you feel any better? Ever since I began taking years ago, it I still feel the same, lousy. I tell the Endo this but they always say the same thing, that my levels are fine now and never change my dose.

Christie

[Christie]

Hi  Patze,

So the Plaquenil helps dry eyes? Is that a medication that causes excess sweating? Is the sweating that bad? I guess I wouldn't care if it helped with my eyes. The medication the Rheumatolgist mentioned was only supposed to help me with my mouth.My mouth is a little dry but I can live with it.

I also take fish oil and take flaxseed oil. I know the flaxseed oil helps a little, not sure about the fish oil but guess it can't hurt. How much do you take? And like you,I take Levoxyl for the Hashimoto's but been taking it for 18 years and I still have all the fatigue and of course even more now with the Sjogren's and Fibro. The Endo keeps saying my levels are okay now with the medication and just ignores me or tells me to exercise.

Do you see the ENT for sinus issues? I had sinus surgery last year and now can't hardly breath at of the side that wasn't worked on.UGH!

Thanks for warm welcome!
Christie

[Christie]

Hi Linda,

Well it's a long story how I ended up with this particular Rheumatolgist. At first they didn't want to give me any referral because of the negative blood tests. See my primary had consulted with one of this other rheumyatolgist without my knowledge, about me and he said it CAN'T be Sjogren's with negative bloodwork. After I argued with my primary about having negative blood work but still possibly having Sjogren's, I was able to finally get a referral. But then my primary tried to send me that that one that said that about the blood work. I thought No way! When I looked him up on the website and saw he was mainly an Internist/Cardiologist who working in the Rheumatology dept. I called back and I said I would like to choose someone else for my consultation. I had already picked the one I wanted to go to because I saw he is board certified in Rheumatogy.

It's weird because on their website (Kaiser) you can see where they went to school, did their residency and what their training and board certification is in, and most of them aren't even in Rheumatology.One was Cardiovascular Disease (the one they wanted me to go to) and another was Nephology and Geriatric medicine, now I'm not that old,lol. Seriously though why would they have them under Rheumatolgists? They only have 2 out of the 6 listed, that are actual certified in Rheumatology so I specifically asked for one of them.My primary hasn't been any help.He's the one that tried to send me to the one that was Cardiologist,lol

Christie

[Wynter]

Christie,

You are very lucky to have found a rheumatologist that would diagnose you based on symptoms. I just returned from Cleveland Clinic and still didn't have any luck. They did rerun my bloodwork and the results aren't yet available. Unless something has changed in my bloodwork, I don't have a diagnosis.

Even though I don't have a diagnosis, I am for the most part being treated. I would like to try Plaqeniel, but can't get a rheamatologist to give it me. I want to know if it will help my eyes. mouth, brainfog, joint aches. Some people have reported that it does. Then again, I could do nothing for me.

All the rheumatogist I saw did say I have fibromylagia. I tried Neurontin, but it didn't help. I was lucky enough to get a presription for Ambien for sleep. I haven't noticed a difference in my mouth dryness, or did I notice a difference in my mouth dryness while taking Neurontin. The Ambine defenately helps me sleep for 5 or 6 hours.

The medication for dry mouth the doctor suggested to you is Evoxac or Salagen. Both are made by different companies, with Salagen being the cheaper one. Both make me sweat, all though is get's worse with each dosage. My presciption says to take 1 Evoxax 3 times per day. I usually only take 2 because I don't want to sweat at work. Some people notice a difference between the two meds. I have taken both and at first the Evoxac worked better, but then I don't seem to notice a difference.

Well good luck and consider yourself lucky. I think it just a thing of luck when you can find a rheumy that will diagnose based on symptoms.

[Christie]

Hi Wynter,

Well it really wasn't luck I don't think. I had to choose this rheumatologist. The first one they wanted to send me to, said it can't be Sjogren's with negative bloodwork and I told them I need to go to someone else and I choose one from the website who I thought would be best. I also had a lot of symptoms and at the time my skin and lips were severely chapped, sores in my nose and mouth, my ANA and TPO positive, spots all over my face, actually he thought I had Lupus too, Plus all the notes and tests from the ophthalmologist and Neuro helped.

Can your Primary prescribe the Plaqeniel for you? Even though I like this rheumatologist, I'm not being treated at all with medication. I am in constant pain and have constant fatigue. He did not explain too much. He gave me a leaflet on both the Sjogren's and Fibro and said come back in 6 months.

Can you see a different Rheumy?

Christie

[theosof]

Hi- sorry to hear about your problems- the dry mouth is so annoying but at least I am staying hydrated from all the water I drink!! I was diagnosed w/ fibromyalgia about 15 yrs ago. I had what I thought was a pretty bad flair at the end of last year but it turned out it was Sjogren's.... I also have Hashimoto's.... The fatigue is the worst for me. I've started nodding off at work and I know my productivity is off- I find myself going from program to program and forget why I was switching computer screens. I was lucky to have found a rheumy who is also a phd in autoimmune issues and does accupuncture. I've just started w/ her but I think things will go well.... Having fibro and SS sucks. They compound each other and the fatigue seems worse. I had a sleep study and am awaiting the results. I think the pain is my sleep issue....I've been taking Lovazza (prescription strength fish oil) and I think it has helped my eyes a bit.  I wish you all the best - it seems we all have to read a lot, share w/ each and hang in there-it is the best we can do...

[lynnmarie219]

Hi Christie and welcome to Sjogrens World!

As the others have said already...you are very lucky to have a rheumy that will diagnose on your symptoms only and it sounds like he did a thorough exam. The only thing he didn't do was to offer you some treatment plan (besides exercise) for your pain, fatigue and other symptoms.

I also have sjogrens, fibro, diabetes, asthma, etc. etc. etc.  I am also on many medications...more than I would like to be, but I wouldn't take anything that I didn't feel helped me...so thats where I am right now. I found my fatigue so bad that I needed to take provigil and it has been my lifesaver. I truly don't believe I could keep working and communting without it! I'm also on plaquenil, mobic (anti inflammatory which helps a lot of us), and other meds for my other medical issues.

It's not uncommon to have sleep issues with fibro. Have you had a sleep study done as this may be helpful as well.

Read all you can and ask any other questions that come up......someone is always around and willing to help out!

[Patze]

Hi Christie,

Let me see if I can explain it a bit better, I was prescribed Plaquenil for some of the SJS/SICCA symptoms I have.  No, Plaquenil was not prescribed for my eyes, it's prescribed for the exhaustion (and it helps a bit with some of the pain too); and like Scottie says, to help slow the progress of SJS.  But I'm also on Lyrica for the neuropothy/fibro pain, Flexeril for the stiff & sore muscles of fibro, and both have an added benefit of helping me sleep a bit better.

Restasis used to work fairly well, but lately my eyes lids are getting sticky again, and when I put the Restasis in them, boy do my eyes sting!  I guess I've developed a dry spot or two again.  It always seems that when one thing gets better, another gets worse.

I take 1200 mg's of fish oil twice a day, I was hoping that it would help the eyes a bit more, but I don't seem to have as many bleeds under the skin as usual - and that's a good thing!

I'm sorry to hear about your sinus issues, and boy, have surgery to fix one thing and another gets messed up, wow.  What did the doctor say about it?  

I'm on my third ENT, and this one at least is looking at the whole picture (so far anyway! ).  I do go see an ENT for my sinus problems as I've had so many over the years.  Now a days I get where it feels like I'm developing (have) a sinus infection (the pain/aches/swelling/fever/sinus discharge (usually clear)), but I've been told a couple of times that it's not an infection, but what it is, no one has said - yet.  Hopefully this ENT will be able to figure it out.

Take care and I hope that you start feeling better soon!

Patze

[Christie]

Hi again Patze,

So the Plaquenil helps with the exhaustion? I could really use something for that because I am exhausted that's for sure. I have even fallen a sleep at work. Thankfully, I was alone in the office at time.l don't know how I can fight this fatigue much longer though. I can easily fall asleep at work, on my way to work, on my way home from work, It's ridiculous. I wonder why my rheumatologist didn't mention the Plaquenil? What's the point of being diagnosed if I'm not going to get any treatment?


The ENT won't operate on my other sinus unless it too becomes infected. Last April I developed Orbital celluitis due to sinusitis and that's when he operated on the right sinus. It was a nighmare. The pain from the orbital cellutitis was unbearable so I don't want to wait for that to happen again. After that I had to get steroid shots for 6 months to break up all the inflammation and help with the pain.I still have pain and it's been over a year since the sinusitis. I only recently been able to start being able to chew on my right side were the infection was. I tried to get a different ENT but my primary keeps insisting he's the best one there and insisted I stick with him.


Well, Thank you again for answering my questions,
Christie

[Wynter]

Christie,

You asked if the general doctor can prescribe plaqeniel? In my experience, I tried to get my GP to do this, but he was hesistant and told me that a rheumatologist should do that. So far, none of the rheumies that I have been to think I have Sjogren's because of negative tests. I have had problems with extremely dry scalp and my skin easily get irritated.  The dermotologist has been addressing that problem. She said the Plaqeniel would probably help. She even mentioned that she prescribes it. Maybe I could get her to give it to me. But I do want to be under the supervision of a doc that understands Sjogren's.

[Christie]

Hi Wynter,

No, I never asked the general doctor for anything other than a referral and he didn't even want to give me that because he said it cannot have Sjogren's with negative blood work.I had to fight with him for weeks before finally he gave in and gave me a referral. I don't dare ask him for any medication for a condition he doesn't think I could have.

I hope you can try the plaqeniel. I'm sorry you're having a hard time with your rheumy. I have had hard time with many other doctors so completely understand about not getting a diagnosis. I went undiagnosed/untreated with one condition from the time I was 12-25 but that's another story.

Do you take anything for the pain? Right now all I have to work with is over the counter stuff and it doesn't exactly help.

Are you able to see a different rheumatogist or are you stuck with the one they assign you?

Have a good day!

Christie