Hi, just been diagnosed with Sjogrens.

[Helen P]

Hi everyone.  I'm new on here.  Just been told I have sjogrens, finally, after a very long waiting game.
I had a rhuem app last week after waiting 4 months, so I was expecting a diagnoses of sjogrens but also a lot more really.
For 2 years now i've had eye problems and being seen at the hospital every 3 months as have eye infections a lot and double plugged as my sch test was 0.
But the rhuem has prescribed pilocarpine which he said has awful side affects that a lot of people can't tolerate it, great!!, and he has discharged me and i don't have a follow up app.  Is anyone else on this medicine? (sorry i'm in the uk).
My greatest health problem other than extremely dry eyes is my awful headaches that are behind my eyes and top of cheek bone almost every day.  The doctors keep telling me that I have migraine, but I don't have aura and migraines are not daily!. I've had these headaches for about 14 years (i'm 33) but as i get older they'r getting worse and completely ruling my life.
Does anyone else have terrible headaches?

thank you,  Helen x

[Linda196]

Hello Helen, and welcome to Sjogren's World. As you can see, I've moved you over to the social board for some "meet and greet" but feel free to post any thing medical, or concerns regarding the symptoms, treatments and other related physical sides of SjS, on the  discussion board. Having said that, you will get replies in this social board concerning your headaches too, of course!

Pilocarpine (Salagen ^TM) is a wonder drug for many, providing a much welcomed increase in saliva, and although it can have some unpleasant side effects (mostly perspiration and increases in heart rate and BP) many people report that they minimise over time, or with adjustments to dosing or timing.

Migraine is a very difficult diagnosis to make based on symptoms, because there so many causes of headache. Many times it's diagnosed because it responds to the standard migraine treatment (triptan family of drugs like Imitrex and Zomig). Not all migraines sufferers experience aura, and not all migraines are regular in timing. I've had what we thought were classic migraines from age 3 to about 8 years ago (I'm now 60).....when I started taking Prednisone for SjS, they all but vanished and my neuro decided they could have been cerebral vasculitis (but neither of us was willing to do a brain biopsy to find out for sure). The location of you headaches almost sounds more sinus based, and SjS can have definite influence on the sinuses, although 14 years is a very long time for a sinus headache.

It seems the only treatment you've been offered is symptom control, is there any way you can see another rheumy or consultant to ask about treatment to slow progression (Plaquenil is the first choice usually) ?

[Joe S.]

Welcome to the forum, Helen P. You will find a lot of information here. Some of us have posted what we are taking in our signatures to help others.

Migraine - I use a breathing meditation to help with that. Find a comfortable position. With your eyes closed look to the top of your forehead. Breathe in and think "Hot Hands", breathe out and think "cool head". Repeat. This will help you manage your migraine.

[Scottietottie]

Hi Helen 

Welcome to Sjogren's world. I'm in the UK too and am really surprised that you were discharged by the rheumy! I only see mine once a year but I know he would see me more often if things took a turn for the worse and when I was initially dxd he saw me after 4 months and then after 6. Whereabouts in the UK are you?

Have you got an opthamologist? That is who I would see about eyes and headaches. I would also possibly see an ENT doc in case the headaches are sinus related.

If you ever want to talk in 'real time' there is a hosted Sjogrensworld chat at 7p.m. every Wednesday evening GMT. Other chats fall in the early hours of our morning.

Take care - Scottie 

[Helen P]

Thank you everyone for taking the time to reply to me and for moving me to the correct place!!

I live in Horley, Surrey very near Gatwick Airport, that live chat sounds good, i'll give it a go.

My rheum said that every blood result I had was a positive for Sjogrens but I didn't have certain things in my blood results that made him want to see me again, so has just written to my dr for the pilocarpine, wonder how long that will take!.

I do see an eye clinic in East grinstead about every 3 months for my plugs, drops and check up.

As for the headaches on my eyes I've had an MRI, 2 sinus xrays, a camera up my nose and seen many dr's and neur but with no success.

thanks guys  x

[Pisces24]

I'm in Eastern Iowa USA.  Welcome to the group!  I was diagnosed via blood test with Sjogrens too.

But I find it odd that your rheumy doesn't want to see you at least once a year to monitor your blood levels, etc.
I see all my -ologists at once a year, maybe twice if I have something done like a CT.

I'm not on any meds either for Sjogrens so that makes me doubly surprised that he is not see you yearly.

[dbab]

Hi and Welcome Helen,

I'm very familiar with headaches.  I get two varieties LOL.

I know you said you see a Neuro but I would suggest seeing a Neuro who is a Headache Specialist.  These are the doctors that can really search to find out the cause. 

I hope the best for you.  I can surely say that headaches are so very, very awful

[Navigator]

You can have headaches as part of uncontrolled Sjogrens. I had them during my first flare and they were really bad...like a burning sensation.  You need to see if you can get back to this doctor or another to see about getting a perscription for Plaquenil.  It is standard treatment here in the US and it works great for many after a few months...some find they produce more moisture, have less pain and less fatigue.

I wish you the best.

[Patze]

Hi Helen,

Let me also welcome you to the SJS World and family! 

Please look around the board as there are some topics that deals with Pilocarpine located by using the search engine in the upper left hand side of this page.

Again, welcome!

Take care of yourself -

Patze

[Meld256]

Hi Helen,

Want to also welcome you to the forum.  You'll find lots of great info. here and some very nice people who understand. 

I'm also not quite sure the rhuemy discharged you, but hope the Pilocarpine will really help you. I do not take it myself but many have had great success. Do you have a primary doc (family doctor) to whom you could ask some general questions?
Good that you have an eye clinic; you may want to inquire there about the headaches. Just a thought.

I have a slight migraine occasionally. It begins with an aura that looks like a sparkly ferris wheel in my eye, which gets larger and larger. After that happens for a few minutes, I then have a headache that seems to wipe me out for a couple hours. I actually never put the two together with Sjogren's until now.

Please keep us posted and take care.  We'd like to get to know you better.
Melinda

[Helen P]

Thank you everyone for taking the time to reply to me.

Woke with a terrible headache/migrane on left eye this morning, luckily my husband is off work today and took our 4 and 2 year olds boys out for a few hours.  So I took a triptan and it has almost gone but feeling quite miserable as it possibly will be there again when I wake up tomorrow and will need to take eldest to nursery, so sunglasses at the ready!

I've also received a letter from my rheumy who said that I have high RF, anti-ro, anti-la antibodies, positive speckled ana at strong titre and high igG levels leading to a high ESR.  The reason he doesn't want to see me again is beacuse I don't consume C4, anyone know what that means!?.

sorry i've waffled on...hope everyone is well today.  thanks Helen