Need help quickly, please

General
1

Hi All!

I hope you are feeling well today! I should have done this sooner but I just haven't had the brain power.

I see the rheumy tomorrow and I need to discuss a number of things. I have primary SS and it seems to be out of control. Since Janurary I have been in an almost continuous flare. The latest has been mainly my ATN. I have never had it this bad! For days I had screaming,crying pain that caused me to collaspe. I have spent most days in bed. Since Friday I've been on 50mg of Prednisone (up form 5mg), 1200mg of Oxcarbazepine (up from 600mg) and Gabapentin 2400mg (up form 1800mg) and Dilaudid for pain. This has helped but I still am debilitated from the pain and effects of the meds. My neurologist said there is nothing else she can do, it is from the SS. I cannot put into words how awful those words made me feel.

This has to stop. I now believe I have no choice but to try biologics. I am also on the usual cocktail of SS meds (Plaquenil, Lefludimide, Restasis) but they are no longer controlling the disease.

My question to all of you is: What do I ask and discuss with him? I am quite out of it so I'm afraid I won't think of everything. I usually make a list but even that is hard right now. Can you help me organize my thoughts so I ask the right questions? My husband will be with me but this has to come from me.

Thanks so much!

Take Care,

Bels

2

Hi Bels

I am sorry you are having such a hard time. Prehaps you and your husband can make a list tonight and if you have problems at the doctor tomorow he will know what to say to the doctor. My daughter has went with me and had to help me explain things to the doctor. Its hard when we caint do it ourselves, I am glad your husband will be with you.

3

purplebutterfly,

Thank you. The problem is that my husband is on a business trip and won't be home until late tonight. We usually do make a list together, but not this time. I am very glad your daughter goes with you. I have such problems remembering when I'm there.

Bels

4

I wish I had something to help but all I have is my thoughts. I will be thinking of you and hoping it is all resolved soon.

5

Hi Bels,

Sorry you are in so much pain, TN is horrific! I've watched my sister in law go through this for years. Let me see if I can get you through this.

Let me ask you this first, do you think the Dilaudid is drying you out even more? I sometimes have to take morphine for PsA, and know how much dryer taking that makes me. I know you have no choice but to take it for the TN, but even though your Doc is a Rheum, he was an Internist first. You may want to ask the question.

I took Enbrel for PsA and had to stop it after 2 years because of recurrent UTIs, when that happened I expected the PsA pain to be out of control, but it really was not as bad as expected, it was the Sjogrens that really ramped. I had never realized how much the Enbrel was helping the Sjogren's! Now it could have just been the shock to my system off just stopping this med that ramped the Sjogren's or it could have actually been helping? Will never know, but it's a thought for you. The Enbrel helped with everything and I took it for 18 months before I had any problems at all. The big crush with biologics is the cost!

So here are some ideas, use them if you think they are appropriate, discard them if not.

Has the Plaquinil stopped working, as the SS is worse?

Is there a more effective (or alternative med) med for SS?

Has the TN pain ramped the SS/has the SS ramped the TN?

Has the pain med increased the dryness?

Is there anything more effective for the TN pain? Anything more effective for the SS? Where do I go from here.

You will need to start telling HOW your SS is worse, the symptoms.

I may be totally off base, just not much to go on but this and your profile info. If I think of anything else, I'll add it. Keep in mind I'm not a medical professional!

My heart goes out to you, I hope that you can get this resolved and feel better right away!

My best,

SK

6

Yes, make a listof questions as best you can. Don’t stress about it (as best as possible) consider asking around for the names of other rheumies in your area Maybe you can get a second opinion.

Many of us here have improved our symptoms by changing our diets; particularly going gluten free and reducing sugar and dairy. Something to consider if you haven’t tried it yet. But don’t be surprised if your doctor thinks little if the idea. Bottom line: many with SS have reduced their symptoms by going gluten free and being careful with what they eat. At least it’s something.

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I am so sorry you are going through this. I am also going through almost the exact same thing you are! (just posted something on it) I too am in mind numbing pain. I don't know what to do myself. I hope you find answers.

*Big Hugs*

Stacie

8

Hello Bells: I am also Primary Sjogrens and I am also trying to get answers. Ask your doctor about Cellcept. It's a med that suppresses your immune system in an attempt to put the Sjogrens in remission....but the side effect that makes me worry is it weakens the immune system making you open to colds and other bacteria and virus. I started taking 250 mg a day yesterday. I'm supposed to double that (500 mg) after one week. See what your doctor thinks about immuno-suppressant medications. I am supposed to have blood testing after one month. I am hoping someone who has taken this medication will see my request and supply their opinion of how Cellcept (or any immuno suppressant) has worked or didn't work for them. I am most afraid of the weakening of my immune system. I'd like to know if this treatment has a higher success rate or if it amounts to trading or adding more illness of another kind. So far my doctor has not given me any insight in what to expect. I feel like a volunteer research project. Surely there is someone who has done this before me. I know my condition has advanced in severity and if Cellcept will stop or even slow the damage caused by Sjogrens, that's great...BUT will I be sick in other ways?

I hope you will continue to share with us how you continue to battle this enemy called Sjogrens. I will report on my experience as well. Thank you, I hope you have much success and relief from the variety of pain we endure. Sincerely yours, the DUSTCATCHER

9

I am by no means an expert on any of this, but here are a few things I would want to ask:

1. What are the maximum allowable doses for the meds you are currently on? (To see if anything can be upped)

2. What are the side effects that should be reported immediately for the drugs you are currently on?

3. Would it be helpful to see a Neurologist for the ATN?

4. It is doubtful, but are there any surgical interventions available for the ATN?

5. Ask him to discuss the pros and cons of biologics, as well as if they are available through him? Also the specifics of how the treatment is performed.

These might give you a start. I have been diagnosed with TN, which I now believe may be ATN. as I have started to feel pains on both sides of my face. I have had better luck with the tricyclic antidepressants than I did with the other drugs. I am more fatigued, but way less brain fog issues. I would have to say that my ATN is not very bad, though. and I do have a couple break through pains throughout the day.

Good luck, and know we are all thinking of you.

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Tramadol? Toradol?

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I didn’t see until now that you have ATN. So do I. It is a horror. My rheumie wasn’t able to help with that. I found a good neuro! I rub a compounded cream on the affected area. It has helped a lot. It is made by a special pharmacy. It has in it: Gabapentin, Lidocaine and capsaicin. When I’m hurting badly from my various ills, I curl up with a heating pad. Wishing you better days ahead and soon!

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Hi I have rhu

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Once more I wrote a long answer only to have it disappear when I try to publish it. It seems worse on my Kindle.

I will try once again.

My advice? Ask for a referral to a pain management doctor. This was the only way I could get out of bed in the morning. ..after weeks on end of sleepless nights. There is NO shame in taking meds you need in order to function. Just take them responsibly and you will be fine. I still have pain constantly but I can manage some of my activities. And I cAn sleep much better. I'll be praying for you.

14

My life was a complete hell. I did not want to use pain meds around the clock and to become dependent on them. I have zero tolerance for junkies... I could not see that taking morphine diLaudid, or oxy around the clock was my only hope for any kind of quality of life. I would suggest you get your rheumy for a referral to a pain specialist. It's just as if you were

dependent on insulin. It does not make you a junkie..just don't start taking more than you are prescribed.

It has made my life endurable.

I will pray for a clear mind and some good conversation between the doctor and yourself.

15

Hi I have rhuemie and sjorgrens don’t no much about either my doc hasn’t been well informed to me was wondering what is the atn?

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Google that exact question

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I have been were you are at but my rummy suggested i see a pain managment doctor I have had 3 nerve blocks and I have been able to live a more pleasant life I send you a lot of soft hugs and hope you go into remission soon go to a support group I also take Lyrics Good Luck

18

Bels, There may be nothing else that "she" could do. But, I wouldn't give up. She's just one human-being. I'll keep you in my thoughts and prays.

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Dear Bels,So sorry to hear of your awful pain, we all seem to know it too well here. Making a list doesn't always work for me, as my Dr usually has a routine she follows and if there is time for my questions or concerns, then yay! So far have also had to go it alone, no matter how bad I felt. Just no one to help me here. But I can share from personal experience, as others have shared, diet is almost key to better days. My pain level goes up after I have really been bad in my eating, or have stressed about something to the point of just being sick. Sharing here, and just reading what others go through helps tremendously .Plus , my faith is what gets me through each and every day. Will for sure lift you up special at this time, as it is all I have to give. God bless you.

20

Hi Bels, I am so sorry about your pain.

I always write things down chronologically as well as with questions. Example: 6/2011: began Plaquenil. 8/ 2011: Plaquenil dose doubled to ____ mg/day. 12/2012: Dr. Put me on Sulfasalasize _____ mg for additional control of SS. 12/14/2012: Sulfasalazine dose doubled. 12/18/2012: Broke out in hives from Sulfasalazine, stopped immediately. 1/2/2013: Bad flare: stiff joints, Dr put me on Methotrexate .60 mg 1x/week injection. 2/10/2013: methotrexate dose up to .70 mg 1 x week

I am just making this up with some facts off the top of my head BUT if you do it like a neat, concise, bulleted, easy to read list I find this helps to REMIND these Drs what has happened before because they forget. Then I write the questions down. Two of my 4 drs now take my list and glance at it at the beginning of each appt and it’s a good reminder. Good luck at your appt! Remember YOU are in charge!