POZ Community Forums
Meds, Mind, Body & Benefits => Questions About Treatment & Side Effects => Topic started by: LunarPariah on March 15, 2017, 02:18:23 pm
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I'm not sure if this is the right area for my particular issue but hopefully someone is familiar with the problem.
(It's kind of long, sorry; however, it's a complicated issue.)
I was diagnosed last July with AIDS with a CD4 of 51. I only found out when I went to see a Rheumatologist about pain I was having in my back and feet. Prior to starting treatment she asked if I would mind doing a HIV treatment, as the treatment has a side effect of lowering your immune system.
She diagnosed me with Psoriasis Arthritis, but because of the illness she could not treat it with the typical methods. The only thing she was able to prescribe for me was Celebrex (which is, in itself, contraindicated for my medicines [Descovy and Tivicay].)
As well as PsA, I have Psoriasis. My dermatologist prescribed Otezla for the psoriasis and noted that some people had PsA symptoms relieved as well. Unfortunately, it helped the psoriasis but not the pain associated with the Arthritis.
At this point, the only thing my infectious disease doctor has been able to do is prescribe a milder narcotic, Tramadol, to help with the pain. We started at 50mg but have had to go up to 150mg, but this is still not helping with the nephropathy. My psychologist even has me on Lyrica 150mg x 2 as an off lablel use for a mood stabalizer. It helps to keep me stabilized but has not been effective in blocking the pain sensors in my back and feet.
The problem is I have serious mental health issues. Many people with my mental health conditions battle with addictions. I myself have not had this issue, thankfully. But because of this my IDD does not want to go any higher on my pain medication because, even though it is a more mild drug, it can still be addictive. This leaves me in a seemingly no win situation with my health. Narcotics are not suggested with people with mental health issues, but the near constant pain aggravates my illness, causing more depressive episodes.
On my most recent visit my IDD asked me if my Rheumatologist had discussed "modulators" as part of my treatment. I have never heard of this. Unfortunately, my Rheumatologist is on maternity leave and will not be back until July.
My question is anyone has, or knows someone, who has these issues who is receiving helpful treatment? Or does anyone know anything about modulators for arthritis.
Any ideas or suggestions are very welcome.
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Hi
Welcome to the forum, sorry to hear about the concerns you are facing.
I am sure someone will chime in soon with something useful keeping in mind we can't give medical advice just personal experience.
Have you tired any Anti-seizure medications to reduce the pain/symptoms by any chance? I know most would interact but "pregabalin" might be okay or something similar, it might at least be worth asking your doctor about it so they can check for you.
Jim
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I have used vit. B 12 (drinking it, not the injection) with success
Neurologist,at the time,said it works on ca. 10-15% of patients
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Hi Lunar and sorry for the pain, I know it well and have been living with arthritis more than half my life. Had 2 knee replacements as a result.
I take Aleve for pain and keep moving, no pain meds.
Taking something to reduce the inflammation and keep moving is the only thing I can tell you. I know it sucks and I hope this helps.
Hugs, Wade