Rheumy appt today

[Sweetgirl]

Hi,

Just wanted to update, or share with you what I found out at the Rheumy today.

When a doctor opens the conversation with "Well, You're still a medical mystery", you know you are not getting any answers.

I am sero negative.  I can try the Plaquenil for 3 to 6 months, but there is only a 5 to 10 % chance that it will help.
He can not give me any meds for the pain.  He is a connective tissue and bone specialist and can not prescribe pain meds for my nervous system.  At least not the narcotic type that I seem to need.  The reason for that follows:

I had told him about getting very ill after trying Tramadol, and that the 3 antidepressants doctors gave for the fibro in the early 2000's (you know that whole serotonin uptake BS)  I was sick from those as well.  He explained that Tramadol also works on brain chemistry (SSI?) and that is why I got so sick.  My body can not tolerate any of the SSI medications.  So Lyrica and Cymbalta are out of the picture for me, those are the two meds he could have prescribed for pain. 

I was glad he explained this, but I teared up when he said he couldn't help with the constant pain issues.  I like this doctor and was hoping he could help me.  He was very understanding and supportive of my feelings.  He validated that what I am going through is very real and not in my head.  He was a bit frustrated that he could not help the pain issues as well.  He is very sure that I have SJS, because as he stated Hypothyroid (unexplained) and SJS are the dynamic duo, they usually go hand in hand.  So Plaguenil it is.  I have a 5 to 10 % shot of this helping.

He is sending me to a pain specialist.  If she can give me some old fashioned pain meds then great. (I don't like taking any meds and only use pain meds for really bad crawl out of my skin pain)  But, if she wants to send me for physical therapy, forget it.  Tried this year, and by the fourth visit my neck and shoulders were on fire!

So there you have it, no answers.  More pain.  BUT, I am happy to have no other issues show up on the blood work and I do have a good life.  I just know it would be a much easier, more joyful life without these chronic pain and fatigue issues.


Hope you are all having a good day.
Kristine

[Reanne]

Sweet Girl,

I am sorry the appointment didn't go better for you.  I am a little confused as to why he couldn't prescribe pain medication for you?  My rheumy is the one who prescribes pain medication for me (Daravocet).  I get enough to take 2 a day if needed.  Most days I don't take any.  I try to save it for "bad" days.  Hang in there and maybe the plaquenil will help.  It did help me alot.

reanne

[Scottietottie]

Hi Kristine 

If it's sjS you have - there has got to be a chance that Plaquenil will help. As you'll have read - it's not immediate relief however. It can take months to 'kick in'. I'm glad you have a doctor you like. Perhaps a pain specialist will help.

Remind me (brain fog) - why can't you take NSAIDs?

Take care - Scottie 

[inga]

I can not take any SSRI drugs either.  Tramadol sent me to the ER.

Lyrica is not an SSRI.  It is similar to neurontin.

I suggest getting to a research facility and getting a skin biopsy to see if you have PN.

[Sweetgirl]

Well now I feel a little put off, by my doctor, that is.

I just assumed the Rheumy couldn't prescribe pain meds because of how we (all patients these days) have to go to a different doctor for every different issue.  I swear it's just a way that doctors keep busy, they refer patients to other doctors and get referrals back as a thank you.   As you can tell I am a very black and white kind of thinker, logical no gray areas.  But everytime I reach out to the medical world for help, all I get is gray areas of thinking.  We don't know what causes, Fibro, SJS, Ulcerative Colitis, etc....    We don't know how to cure all of the above.....  We don't know if this medication will work for you.....blah, blah, blah.

I don't know much about different meds, so I don't know what messes with brain chemistry except Tramadol, and antidepressants.  But, he did say that I couldn't take Lyrica.  Why if it doesn't do what the others do?  I thought I heard on a Lyrica commercial that Lyrica can cause suicidal thoughts.  That to me means it is messing with the brain chemistry just like antidepressants that have those same warnings. 

Should I be seeing a Neuro doc???   Why does everything have to be so darned complicated these days???  I just would like someone to help me for a change.  (the Docs, not you guys   )

This was the first time to see a Rheumy since 2000.  He said the electrical type pain I have (most days) is most likely from the Fibro.  I don't really understand the difference between SJS pain and Fibro pain.  I just hurt all over and my knees, ankles and elbows feel like sharp needle pains and burning. I have trigger points on upper back, shoulders and clavicle area.  I feel like my neck, upper back and joints are being compressed.  Constant fatigue.  And burning pain that radiates from the bones out to the skin, and in some places, just the skin feels like, wind burn?  I don't know how else to explain it.  Yet, I have no swelling and no signs of inflammation in my blood work??

So if the pain is not caused by inflammation, why would I take NSAIDS??  Motrin only works on headaches for me.  I'm not being a smarty, I really don't understand how anti inflammatories would help if I don't have inflammation.  Can anyone shed some light on this for me?

Also,  I thought nueropathy was a loss of sensation, or a tingling sensation?  Can nueropathy also cause burning pain?? 

Thanks for any help you can offer.  I hate feeling, or seeming so helpless on this.  How do you differentiate the different pains and nerve sensations?  Like I stated in a previous post, I gave up on docs in 2005, so it's been awhile since I've dealt with any one other than my GP, and sometimes I would only see him once or twice a year.

Thanks

Kristine

[irish]

Sorry that you are having such a time of it but that seems to go with autoimmune disease as most of us know.

First of all, I know that Lyrica was first developed for the neuropathy of diabetes and it has been used in other neuropathy as well with good results. I just looked up Lyrica and Neurontin(gabapentin) in my nurses drug reference and neither one of them are listed as antidepressants of any type. In fact they are both listed as more of a pain med along with anti seizure properties. Many times a drug is in a certain family such as the antiseizure property and in the drug studies the researchers find out that there are other ways that the drug is useful.

Lyrica is a good drug for fibro or any other disease that gives a person neuropathy. There is another drug called Wellbutrin that is an antodepressant but is not a tricyclic or a SSRI. I don't know if this drug has ever been used by anyone for anything other than an antidepressant or to help when quitting smoking.

Also, every single antidepressant plus a lot of other medication on the market can cause suicidal ideation, etc. This is one of those things that can happen and especially if people are taking "street" drugs and alcohol at the same time. Many times it gets a little fussy about people attempting suicide while on some drugs. Make one wonder just what they were mixing drugs with.

I would suggest that you see a neurologist for w reasons. First of all it might help to see what type of neurpathy you are having == and yes you can having burning, feelings of bugs crawling, little muscle spasms caused by neuropathy, the list goes on. It might be good to see what a neurologist can come up with as far as making sure that you have a good diagnosis. A pain specialist would be good also. They would be more qualified to sort out what drugs you can take as they work with pain meds all the time.

Also, NSAIDS could help you much more than your realize. Sjogrens is listed as a connective tissue autoimmune disease. It causes inflammation in many areas of our body. The saliva glands are destroyed becasue of inflammatioin and many of the  aches and pains we have can be controlled with NSAIDS. It seems like your rheumy has been good in some ways, but he sounds like he is not good at sorting out pain issues or at explaining to patients how drugs work and why they should be used. Maybe it is time to get a new rheumy after the dust has settled. Do not despair. Also, the percentage he gave you on the Plaquenil sounds very pessimistic. So many people on this site have had good response to it.

When starting the Plaquenil it is recommended to take prednisone at the same time. One needs the prednisone to help control the inflammatory processes of Sjogrens while the plaquenil is building up in the system. Plaquenil takes 4 months or longer. The prednisone is started and then slowly tapered down. When it gets to the point that one is not having as much pain, etc that means that the plaquenil is kicking in and the person can then get tapered off the prednisone.

Also, when you are starting the plaquenil one should see an eye doctor to get a baseline eye exam. Plaquenil can cause some eye issues. This is very rare. Reason being, it is a malaria drug that was discovered to be a potent anti-inflammatory drug also. It is given in much lower doses to sjogrens patients and therefore the eye issues are very rare. Generally one needs an eye exam every 6 months or so. This way the doc can watch the eyes for problems. If it starts to cause issues the plaquenil can be discontinued and the eye issues usually resolve. Many people on this site have reported that their eye doc has been prescribing this drug over the yers and had never seen any eye issues. Hope this answers soome questions foryou. Don't take my work for it---ask qwestions of docs and do some googling, etc. Irish

[Sweetgirl]

Irish,

That was very helpful.  Thank you.  You may be right on the new Rheumy.  (sigh)  I don't like doctors.  Some of them are very nice people, like my eye doc, but most of the time not very helpful.

So I will start the Plaquenil, prednisone was never discussed.  No signs of inflammation in blood work or joints, I guess that's the reason for not discussing.  (?)  I will make an appt with the pain specialist and see what she suggests.  I have tried massage, accupuncture, yoga, stretching, and different meds.  Can't even enjoy a glass of wine any more, makes me feel sick after a few sips.

I guess I'll just give the Plaquenil a chance.  Thank you very much for your time in explaining things to me!

Have a great day!

Kristine

[inga]

Yes, neuropathy causes burning pain.  That is the hallmark of small fiber neuropathy, altho, neuropathy can cause all kinds of pain sensations.

[tedebear710]

Hi, Kristine.  I'm sorry that you are struggling so much with the pain and that you can't take many of the meds they use to treat it.  I've been taking Tramadol for 10 years.  It doesn't wipe the pain out but it's better than nothing.  I would not sleep at all without it.

Have you ever tried an NSAID?  Despite the fact your blood tests don't reflect it, some muscle and joint paint is due to inflammation.  It doesn't always show up in labs.  A good example is tendonitis.  It's a common problem with Fibro and SJS.  That won't show up in blood work.  I have it every couple of months.  Now it's in my left elbow.    My suggestion is, try an NSAID for a few weeks.  Aleve and Motrin are two of the best OTC brands.  Because your brain/stomach are so sensitive to meds, make sure to eat a good meal and then take it.  I didn't think an NSAID did much for me, either, until I stopped taking it.  Boy, my body said hello-howdy, what are you doing to me?  

I'm also a seronegative Sjoggie who has Hashimotos and Fibro.  I've had a couple low positive ANA's and elevated SED/CrP levels, but that's it.  Despite this, my Rheumy prescribed Plaquenil last August.  Along with the other meds, I am doing better.  It can cause a little nausea and tummy distress for a few weeks, but it will go away.  Hang in there.  Please give it a chance.  You may find pain relief.  It can take 3-6 months to see a difference.

Even though we hate to see so many specialists, it's the only way to get our various issues treated, unfortunately.  I have peripheral neuropathy and see a Neurologist every 4-5 months.  He tried Neurontin and Lyrica for the P-N.  First one didn't work, and second had bad side effects.  He prescribed another med called Lamictal.  It has caused great improvement and with NO side effects.  The Neuro said everyone is different, it's a matter of trial and error.  Don't give up hope.  A Neuro may have the answer to your pain management.  Mine has been much more helpful than the Rheumy.

Best of luck, sending gentle (((hugs)))...

Mary