I have SFN and have pain all of the time. However, last week I started having really bad pain in my arms and back. It is not just the burning. It is alot of muscle and joint pain. It hurts to touch my elbow joints and my hands are really sore as I am typing. As usual it is hard for me to describe. It feels like I have been beaten in my arms. Worse then how you feel when you have the flu but I am not sick. I can't figure it out. I did stop my Plaquenil a while ago but it was a few weeks before these symptoms showed up. I did not like that med it made me feel indifferent to everything and everyone. I figured out it was from that after I ran out and didn't have it for three days. I felt happy again. Then I had it refilled and took it again. Even my husband said he saw a noticeable difference. It has been about a month so I don't think it is from the medication.
Any ideas. I've been waiting to see if it goes away but it has been about a week now. Any thoughts would be appreciated.

Why were you on the Plaqunil?sp? Have you told your doc you stopped it, and why? S/he needs to know I would think.

Seems odd that the Plaquenil would cause the indifferent feelings you described. It has a half-life of 30-60 days, so takes a long time to get out of your system. Plaquenil is known (and specifically used) to help reduce joint pain in autoimmune disease. So maybe it was helping more than you thought...until you stopped it and now have more pain now that it's out of your system.

I'm guessing you have some autoimmune aspect to your PN, if you're (or were) taking Plaquenil. If that's the case, another idea is that something triggered a flare of the AI disease itself.

I would suggest you call the doctor about the Plaquenil. Maybe a lower dose might help with the joint pain, but not give you any of the negative side-effects you attribute to it.

Hoping you feel better soon.

Hi aussiemom, The reason for the plaquenil is that they believe my PN is auto immune related. I did not tell the doctor about stopping it. I am going to call today. This is more pain than I can handle and I can usually handle a lot.

En bloc now that I know Plaquenil has that long of a half life, I am thinking stopping may be the reason for the pain. However, I was not in this much pain before I started it. I don't think I've ever had this much joint and muscle pain. I don't know if this could be a flare up of AI disease. I do have cold sores on my lips also, but I don't feel sick. Just in pain. Thanks to both of you for the advice.

If you decide, after talking to your doctor, to restart the Plaquenil (at reg. dose or lower), keep in mind that it also takes a long time to build back up in your system. You won't see immediate results. It could be a couple/few months before you see significant reduction in pain. You may need something to help with pain until the Plaquenil re-establishes in your system.

I was referred to a rheumatologist for treatment of like symptoms, and was prescribed Plaquenil for 90 days. It had no effect on my symptoms and was discontinued. We learned that Plaquenil was originally created as a treatment for Malaria and was found to be effective in treating rheumatoid arthritis.
The Specialist determined that my condition, did not manifest as an autoimmune problem such as RM and so we stopped following that trail. My PN was generated by a double dose of H1N1 vaccine in the fall of 09 and is currently being treated with Prednisone and a supplement cocktail called MaxiEnergy, with encouraging results.

Hi Terry, How did they manage to give you a double dose of H1N1 vaccine. I am glad that the treatments you are taking now are working for you.

I work as a Care-Aide for a group home for Developmentally Challenged Adults. A job requirement was to be vaccinated for Flu and for H1N1.
We took several of our residents to the clinic and received the H1N1 shot in Oct. 09. There was a shortage of regular Flu vaccine and so we were asked to return in two weeks time. I was off duty so my wife and I went to the clinic for the regular Flu shot. The administrating nurse grabbed the wrong vial and injected me with the second dose of H1N1 vaccine which in 09 contained the adjuvent "squalene" used by the pharmaceutical company to extend the potency of the vaccine. I was assured by the supervisory staff that no harm would come, and so received the regular flu shot as well. PN symptoms began to manifest about a month later and have continued to this day.

That is such a shame. I am really sorry to hear that. I am sorry you have to go through this due to an error.

Compared to many who suffer from neuropathic disorders, my case is mild. Thanks to a positive attitude, great support from my family and my medical and naturopathic resources, we seem to have rounded a corner.I look forward to contributing to the forum in whatever manner I can, in hopes that my experience can be of benefit. The Internet, for all it's faults and dangers, has been a marvelous tool in my recovery efforts thus far. What a blessing to have been a part of it's development.