Advice Please

General
1

Hi All,

As most of you probably know I have been assigned a clinical nurse specialist as well as my consultant Rheumatologist. She rings me each day to check in with me and see how I am getting on and answer any questions or queries I may have.......

Any way she rang me today as usual and told me some of what will be happening next week, one thing was they would take some of the fluid from my knee for testing....ahh. What does this mean and how will they do that? Also she said I will be getting infusions of meds - anyone know anything about that? She also said I will be having biological drugs, DMARD's, anti inflamatory tablets, steroids, painkillers and some more can't remember what she said exactly. Any way can anyone tell me what to expect from these? Are there any undesirable side - effects? She mentioned hair loss and / or hair thinning as this is something I do not want - with everything else I don't I could handle this. Also do you think my appetite and sleep will return to normal soon and I won't be as emotional as today I am crying for no reason a lot.......

So if anyone would have any advice ahead of next week I'd love to hear,

Thanks In Advance,

Carolynn

2

Hi Sweetie! The good news is many of those things are going to give you relief! Sounds like your team is going after your disease aggressively which is the only way to do it. PsA is aggressive so you have to fight it that way. There’s always chances of side effects but mostly the benefits soooo outweigh them! I’m excited for you. Go into this with the mindset that you are going to get help!!! Hugs, Sharon

3

As scarey as it is, this is going to help you in the long run. Hang in there and remember we will all be here for you.

4

Wow, Carolynn! You have someone that rings you to see how you are doing? Lucky you! There are more than a few people here who would welcome that kind of help. I'm sorry though, that your condition is such that you are facing a medication mountain. The good news is, that it all spells relief for you. And that's a good thing.

The aspiration of the knee fluid. I haven't had it, but I have had many injections into the joint space of the knee. Same thing, different direction I should think. It'll pinch a bit, but no biggie.

Steroids. Long term, they can cause all kinds of problems. Short term, they can give you incredible relief, and FAST. There's a chance they may make you jittery, but if that happens, they will reduce the dose. When I got my first dose of steroids, it felt as if I had had an IV with soothing lubricant in it. It was wonderful.

DMARDs. I am now on three of the four most common DMARDs (methotrexate, sulfasalazine and hydroxychloroquine), and I've had no botherome side effects from any of them. (No good effects either, but that's another story ... LOL) Should you not tolerate any of them, they will take you off it, and the unwanted side effect will stop.

Biologicals. These are usually saved for later, if the DMARDs don't work. But it sounds as if they are going after your PsA very aggressively and cutting to that chase sooner rather than later. Good news. I haven't been given a biological yet, but from what I understand, when they work, they work really well.

Hospital bonus: they will give you better pain killers and things like sleeping medications which they normally wouldn't let you try at home.

The bottom line. Before too long, Carolynn will be feeling much better. Looking forward to hearing good news from you!

Seenie

5

Hey, Carolyn! Seenie has given you a wonderful summary of what's ahead. Don't know that there's much I can offer in terms of specifics. Just remember that they have to tell you all the potential side FX of a drug--even the ones that most people never get. Methotrexate and Plaquenil both can result in hair loss. I'm taking both and have been for almost a year with no problems. I know how worrisome that can be because I was scared to death. I don't have much hair to start with! Losing it was not an option. lol But so far so good.

I believe the knee procedure they're talking about is called an aspiration. They'll take a small fluid sample and analyze it microscopically to help pin down an accurate diagnosis. It's just one more tool to ensure that they aren't missing something. It's a way to get a stronger diagnosis.

Not sure what kind of infusions you may be getting. We may have different names for drugs over here, too. (I'm in the U.S.) You may just receive fluids--that's getting to be standard these days. Or maybe they will be trying you on something like Remicade, which is a biologic given by infusion. There also are steroids that can be given I.V., such as Solumedrol (which I absolutely LOVE). I would divorce DH and marry Solumedrol if I could! Seenie's description is so on-target. The steroids feel like somebody just greased up my joints. I can move again and it doesn't hurt. They also clear my skin and put a damper on my allergies. In short--they are wonderful!! Side effects become more expectable with long-term use of steroids, though, so short-term is usually the way they are prescribed.

I'm sending you a page that will outline all the meds used for arthritis and tell you a bit about them. It might be of more use when you get home than it is now. But there's some good info in this page. http://www.medicinenet.com/script/main/art.asp?articlekey=15144#3meds

Do you have socialized medicine over there? Whatever your health system is, it sounds amazing. I would kill for an opportunity to be evaluated like this. You are one lucky duck (although, I'm sure it doesn't feel like that right now.)

I agree with the other posts--it is great that you are getting this kind of attention and that they are aggressively going after this. That's the best news! In a couple of weeks you'll have some answers and a treatment plan. How great is that?!!

We're all thinking about you and pulling for ya! Keep us posted!

6

Hi Carolynn,

It sounds like they have you on a really great treatment protocol. For that I am really happy for you, and that all physicians were as thorough as yours sounds. I really hope that they can find you some relief and some treatment that will help you tremendously! I have only (so far) had sulfasalazine (a dmard) for about 2 months now, and it has not really helped at all, so I can't really tell you much about meds, but this place is a wonderful resource from all of the other people that have experienced the meds first hand.

Good luck to you....I truly wish you well.

7

I'm so glad you're finally going to get some of the help you need.

The biologics aren't as bad as they sound, they just scare you with the potential side effects (and everything, even aspirin and cold medicine have potentially serious side effects). I haven't had any problems with mine so far. Methotrexate has the possible side effect of hair loss and I've supposedly mouth sores, but folic acid is supposed to help minimize the side effects for this. I'm also taking it and haven't had any hair thinning or hair loss. The only issue I've had is a little nausea, a little fatigue and a little dizziness; mostly in the first couple of days.

On the plus side, with both the methotrexate and biologic, I'm starting to have days when I feel almost normal again. So there is hope. It will get better for you too! Keep your chin up and stay positive!

8

Hi, Carolynn

I'm sure I'm not the only one on this board who was thinking of you this week. How did things go at the hospital? I'm hoping, at the very least, that you got some much-needed rest.

When you're feeling up to it, please let us know how it went, and how things are going for you!

Seenie

9

Seenie is right. I've been watching for a post from you. I am thinking maybe they aren't letting you use your computer in hospital. Silly me, I should have posted anyway! Bad Byrd!!! At any rate, we are thinking about you and hoping things are going well. Can't wait to hear what you are finding out. Hope you are feeling okay. Stay in touch as you can!

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We're all hoping you are doing well Carolynn

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Holding you in my thoughts and prayers, Carolynn! I hope you update us when you can!

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Carolyn is still in the hospital, and has posted on another thread. Thought I'd get the system to let you know by email...

Seenie

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Yes, I figured she is still in hospital and might not be able to use her computer in there. They're funny about cell phones, computers in hospitals here. Anyway, Carolyn, I'm hoping you are feeling our warm wishes heading toward you! Thinking about you and wishing you well!!!