Help!! .... and an Update | Arthritis Information

Hi Everyone,

It's been quite a while since I've posted. Life has been quite a rollercoaster over the past six months or so.

Just to refresh - I have RA, OA, diabetes (insulin dependant now) and myeloma. Over the last six months the myeloma has moved from indolent to multiple myeloma so am now having regular infusions to strengthen my bones. The plan is for IV immunoglobulin and chemotherapy within the next few months.

RA - 30mg methotrexate injection, arava and plaquenil. Pain meds. Substantial weight loss with the progression of myeloma has at least had some benefit / relief for the RA and OA.

Now to add insult to injury I've just come down with shingles in the last few days. Was in time to start an anti-viral. Rash is extensive - from the navel around to (and up) the spine, along the waist and about 4 to 5 inches below the waist. I know a few of you have written about shingles recently. What I've love are some suggestions about how to cope with the pain (it is both horrific and hideous!) and the rash. I'm finding that hot baths give some relief (can't spend all day in the bath though unfortunately!) and heated wheat packs on my back and along the side of my stomach do help to a certain extent. Oxycontin is helping for pain but is certainly not covering it - I've never experienced anything like this pain in my life. Can anyone suggest anything else??? I'm also using calamine lotion on the rash - helps for a little bit.

Thanks for all your help.

Yikes- I have no experience with this but I sure hope you feel better soon!

Thanks wanntobe - I hope so too. It's exhausting!!I do not know how you keep your head on straight...I would be going crazy and be very depressed. I do wish you good health and that these diseases subside. How awful it must be!Hi jodejjr,

One day at a time, One foot after the other - that's the only way to go!

Thanks for your good wishes.

Cheers.

Greenfrog, I am so sorry to hear what a tough journey you are having right now. But I admire your courage and agree, one foot in front of the other, slowly, surely you will get there.

I would suggest you try Calagel instead of the Calamine. I think it works much, much better, feels cool going on, and it isn't nearly as messy!

Hope to see more of you around these parts!

Take care,

Karen

You are having such a hard time-and shingles on top of it. I have had shingles in the past, but it has been around my eye. All I remember being given was pain meds(lortab I think). Aveeno makes packets that you put in running water. It's colliodial oatmeal. That might be helpful. Of course, as you said-you can't live in the bathtub.

If it is really bad, please call the dr. You sound like you have a pretty large coverage area. I know drs get more concerned as the coverage area becomes greater.

Sorry I don't have any better advice. I hope you feel better.

Thanks Karen, SnowOwl and Rebecca for the suggestions and good wishes.

I'll get someone to call in at the chemist tomorrow and see if Calagel and the oatmeal packets are available here. I think I have some aloe vera gel around the place somewhere - will go and dig it out and try that to start with. I've had friends who've had shingles and they said it was painful but I didn't understand just how painful it really is! I know that I'll be so much more sympathetic to someone with shingles in the future!!

Another side effect of all this is is that I've had to miss my methotrexate shot this week and also postpone my infusion for a fortnight or so! Bother!

Thanks again!

I am so sorry you are being blasted with so many difficulties: your predicament is certainly the epitome of the adage about when it rains it pours.

I send you my best wishes for relief from the pain of the shingles and a speedy return to RA therapy.

Cheers, Shug
Thanks Shug!

And rain isn't forecast here for another few days at least!!

Thank you for your good wishes. You absolutely amaze me Shug - with all that you are dealing with yourself right now that you are still able to be there for so many of us and to encourage us to be the best we can be. Thank you!!

How are you going?? Have you been able to have that popsicle yet? and visitors?? My wish for you is for healing, strength, peace and lightness of heart. Thinking of you and sending you good wishes across the miles.

Cheers.

Hello Green frog.

Your attitude of one day at a time is so right, when all these things hit you at once you have to be logical or I think it would completely overwhelm you. I hope you get something sorted for the shingles, thats a really large area to have them and they are so painful, Aloe vera was a godsend to my mother when she had them.

Does Myeloma spread quickly and is it to do with a protein...I was reading a book about somebody who I think had it.

I hope you get some relief from the pain of the shingles soon.

Lisa

How very kind and thoughtful of you to inquire about me...I am actually doing well and YES! I did get that cherry popsicle. It was every bit as good as I had imagined it to be. Funny how such little luxuries as a popsicle can become so important.

Still no visitors, but I have been given access to the hallway for walks. Your good wishes mean more than I can express. Thank you.
My pleasure Shug. YEAH!!! I'm glad that the popsicle was everything it should be! Hope the next step is some solids to relish and enjoy! Those hallways are amazing vistas after the confines of four walls!!

Thanks Lisa. I'm about to try the aloe vera gel and see if that helps.

I was diagnosed with the myeloma about 2 years ago and we were hoping that it would stay in the indolent or smouldering stage for a lot longer than it did. It's cancer of the plasma cells in the blood and ultimately it will affect the bones and eat them away. There are a few options down the track after chemo - bone marrow transplant is one of them. Hopefully that's aways off for that one though! I'm lucky at this point that my calcium levels are still good as is my kidney function, so it isn't as bad as it could be. At this stage I take whatever good points I can and focus on those. One day at a time is what I can manage to deal with and the hope that tomorrow is a better day than today. I would have preferred that shingles hadn't put in an appearance though!!

Thanks so much for your help everyone. I'm going to have a try at finding a comfortable position and see if I can sleep for a couple of hours - wishful thinking but I'm going to give it a go regardless.

Cheers.

Greenfrog, I hope you are having a better day and that the pain is beginning to recede. Have you been able to rest? Keep yourself well hydrated and be better soonest! Hi Shug.

How are those hallways looking? I hope they are treating you well!!

Have managed to get some sleep. Sometimes it is literally nodding off wherever I happen to be sitting at the time! The pain levels are beginning to lessen - maybe that means that the pain meds are better controlling things at present. The rash seems to have stopped spreading so that is good news! So far today has certainly been better than yesterday.

Thanks so much for your good wishes - it does help.

Cheers.

Glad to hear that you are feeling better. I know it is a slow process-very frustrating. Hope tomorrow find you feeling even better than today.I am trusting that your today was better than yesterday and wishing that your tomorrow is even better. Take your rest where you can, Greenfrog, and know that you always have my very best wishes.
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