Pain Medication? It really hurts and I can't sleep.

[blm]

Are any of you taking something to relieve pain? I was diagnosed in August 2016, had 4 rituximab treatments, and felt pretty good until this Tuesday. They have tapered my pred from 60 to 30. I think I'm having a flare. Lots of pain, a rash, a fever. Pain from my left ear all the way down to the tips of my fingers. The rash just started yesterday and has spread down my arm. My thumb is completely numb and the nail is discolored, black specks forming under the nail. Almost went to the ER this morning, but instead I have called docs and scheduled appointments with them for tomorrow. They don't seem to want me to take any kind of pain medication. They say I should try to "tough it out". For sure not Nsaids. Primary care doc said I could use tylenol, but all I've got is tylenol extra strength. It doesn't seem to be helping much and I can only take it once every 6 hours.

Just curious what anyone else is using. I had planned on going back to work full-time next week. You know what they say about plans. I guess that goes double for us.



--Becky

[Gab122]

Hi Becky, I'm so sorry you have this going on! If you are in tremendous pain I'd say go to the ER. Which dr told you to "tough it out"? Your rhuem? That doesn't sound like a good dr to me. Please update us after your appt. I will be praying for you!
Gab

[Debbie C]

When was your last infusion ?? This could be a reaction to the rtx. Also dropping from 60 to 30 in pred is a pretty big drop, you can always take some more pred,that should help with some of the pain,maybe go up to 40.I think if things get worse you should go to the er and hope there is a dr. there that knows something about wg. or maybe he can call your dr and have a conference with him about your treatment. Maybe even taking benedryl might help but I am not a dr and don't know your whole situation so I do not want to tell you to take things you shouldn't but upping your pred shouldn't hurt you at all. Hope you feel better and let us know what they say.

[blm]

Gabb - It was my rheumy, but he has since given me his cell number and had me call him directly. Hope he doesn't regret that later.

So here's the latest. I went to my scheduled appointment with my pulmonologist. He didn't know what the rash was and said I should see a dermatologist. I called my rheumy and he told me to come by immediately. He looked at the rash and said he thinks its shingles. It does look like pictures of shingles. It didn't have the tops on the bumps until today but now you can clearly see some blisters on top of the bumps. He prescribed an anti-viral and he cut my prednisone from 30 to 20 mg. He says it is not going to be a pleasant experience and told me to text him on Friday and let him know what's happening.

Guess I won't be going back to work on Thursday. The worst is the pain and the numbness in my left hand. You never realize how much you use your left hand until it doesn't work or it hurts, right?

Thanks for your thoughts.

-Becky

[Gab122]

Ugg. Sorry you are going through this!!! I guess you picked up the shingles virus and your body wasn't able to fight it off - hopefully the anti-viral will help. Thinking of you! Hang in there and update us tomorrow if you are able. Did your rheumatologist give you anything for the pain?
Gab

[blm]

Thanks Gab -

No he didn't give me anything yet. Just Tylenol for now. But he did say to text him if it was unbearable and he could prescribe something. Maybe he doesn't want me to get addicted? As a drug prevention proponent, I could appreciate that. Some docs hand those things out like candy.

[vdub]

Why no NSAIDS? I can't take NSAIDS, but I also have a specific reason why I can't. Seems odd to me that you can't. Really to bad, too, because Ibuprofen helps my aches and pains a whole lot. I found that out by taking Ibuprofen before I learned it was verboten. The only thing I can take for pain now is the typical list of narcotics. I've been on a mix of hydrocodone and tramadol for the past 6 years. When I say "mix", I mean one or the other depending on the severity of the pain. For a while the pain warranted a steady diet of hydro, but for past several months, tramadol has been doing just fine. You might ask them about tramadol if they won't let you take nsaids. Theoretically, tramadol is non-addictive.

Hard to imagine your pulmunolgist didn't recognize shingles. Red bumps cropping up on only one side of your body, ie, left or right, but not both, is pretty much always shingles. If your health system is like ours, it would have taken you a week or more to see a dermatologist and your pulmunologist would've known that. I'm glad you called your rheumy. Even if its not shingles, at least he is being proactive. I've never had shingles (I got the vaccine), but I hear it can be quite painful. My mother-in-law lost sight in one eye due to shingles. Good luck and please let us know what they finally dx.

[annekat]

Becky, it seems like he's dropping your prednisone awfully fast, which could contribute to your pain. But I guess a higher pred dose could also contribute to letting a virus such as shingles take hold. Sort of a no-win situation. I hope the anti-viral makes a difference, and that you won't hesitate to tell him if you really need a prescription painkiller. Best of luck to you in recovering from this setback.

[Alysia]

Hi Becky. So sorry for the shingles. I heard indeed that the pain is big. I use paracetamol for pain. I can take 2 pills if needed, every 6 hours. Hang in there. Sending prayers ♡

[blm]

Anne -

Thanks for the good wishes! I think you're right about his reasoning, Anne. I've been doing some more research on shingles and did read that folks who were on higher doses of pred with shingles also had a higher risk of the more long term and serious effects from it. I've also found some good news on that same site. It said the anti-viral drug could lessen the severity of the shingles when started within 72 hours of its appearance. I think we might have made that. At least we were pretty close. Rash appeared Saturday morning. Took my first antiviral at 2:30 on Monday. I've already noticed a bit of a change in the rash and reduced pain. Feeling hopeful!

-Becky