Re: Cindy (n's Mom) about wrist issues

[Guest guest]

Georgina, Thanks for your email. It answered a lot of my questions. I

think I am a pro at this disease after five years, and then I realize what

little I know. As you probably remember n flared this last winter.

She went on steroids and then we tapered off in June. But for the first

time in five years the arthritis has settled into some joints big time. It

is in both wrists and one knee. n traveled this summer for three weeks

and that is when her wrist froze. I am feeling guilty for not seeing it

sooner, or not pushing the doctor harder for joint injections. He doesn't

do injections, says that he hasn't seen great results with the wrists, and

that their Children's Hospital doesn't have any ped. Ortho's that he would

recommend. We just changed insurances -to Kaiser(boy are they going to lose

money on us)-and so we have an appt two weeks from tomorrow with a ped

ortho.

In the meantime our rheumy put her on mtx in June, and it was awful for

n. After the first dose she got so sick, so we started splitting the

doses. After seven weeks it was just as bad, and n was miserable. So

she went off of that and on to enbrel last Thursday. This has all gone

pretty fast since she has been on the same old medicine for five years.

(and my husband forgot to ask the rheumy about the plaquenil and all that

talk at the AJAO) Our rheumy says that her wrists should loosen up and then

maybe we could have splints made. School starts in two weeks and there is

no way n can write. So we are hoping that the enbrel does its trick

and helps her wrists. I just have never seen anything like this. Her right

wrist has no movement. Her left is not much better. I will try the wax

bath. Thanks so much. and n

(n's Mom) about wrist issues

>

> Hi ,

>

> The children and I were out in Waiehu all afternoon/early evening

> yesterday, for a special event that my friend had organized. When we got

> home, I got your message on our answering machine. It was so nice to

> hear your voice. I wish you'd left your number. I wanted to call you

> right back but when I noted the time difference, I thought it was

> probably too late already, anyway.

>

> Josh's arthritis has been that migratory type that travels around to

> various joints (instead of settling permanently into particular ones)

> and over the years it's affected mainly his fingers, wrists, elbows,

> knees, ankles, and feet. It would settle in an area for months at a time

> and then mysteriously disappear, only to attack somewhere else. What

> disturbed me in the earlier days was that I believed that when it left a

> particular joint, that was it. It had done it's thing and finally moved

> on. Later on it became apparent that those joints could (and would!) be

> revisited.

>

> You said that n's wrists are frozen. Josh had lost a lot of range

> of motion in his wrists ... but he's regained it. There were times when

> he wasn't able to flex his hands upward at all. They were rigid, flat,

> and so stiff. If you look at your own right hand, you can see that joint

> on the right hand side, the bony bump. Well, Josh had one form on the

> left part of that wrist, too.(Actually, on both wrists.) It looked and

> felt like a bony protuberance, like it would be permanent, but it did

> eventually go away. (I called it a nodule but I'm not sure that's right.

> It definitely didn't feel like a fluid-filled sac.) However, last year

> when he had his bone age test done and they took xrays of his wrists, I

> remember the report saying there was some abnormal deformity of some

> particular bones. Some permanent damage must have been done. Each of our

> hands has something like 27 bones, plus the two bones of the forearm

> that meet up at the wrist, so I guess it can get pretty complicated. I'm

> just glad that he has good movement now and no more pain. At least for

> the time being.

>

> Josh had wrist splints fitted by the Honolulu Shriner's Hospital, after

> seeing their occupational therapist. Years ago. Hard, molded, plastic

> with a beige fabric and velcro enclosures. They were to help keep the

> joints in the correct position and relieve his pain. Resting splints,

> that were to be worn at night, but when his wrist pain was really bad he

> sometimes reached for them during the day, too. He used them every night

> for months on end, until his wrists started feeling better again. They

> came out again, two or three other times, when the arthritis was active

> in his wrists: stiff, swollen, and very painful again. The last time we

> noticed that, all of a sudden, the splints no longer fit! We brought

> them back to Shriners and exchanged them, for a single splint for his

> right wrist.

>

> Besides the splints, got some pain relief from using the paraffin

> wax bath. We picked up a small unit, at either Walmart or KMart, and he

> used it several times a day. Dipping his hands, then wrapping in a towel

> to help keep in the heat, then peeling off the hardened wax to reuse it

> the next time. Very good investment, as it cost only about $30 and

> seemed to really help the pain.

>

> Anyway ... if you have any specific questions, please ask. We'll be

> heading out to Iao Valley shortly, for my friend's son and daughter's

> birthday party/barbeque but I will definitely look out for your mail.

>

> I am feeling very encouraged about n starting Enbrel. I hope it

> works really well for her!

>

> Aloha,

> Georgina

>

>

>

>

>

>

>

[Guest guest]

Hey

Sorry to jump in on this conversation but I've had a lot of

experience with my own wrists so I thought I'd chime in. I've had

multiple injections, particularly in my left wrist, and they

definitely helped a lot, although it eventually wore off. I also had

splints that were for after injections and at night, but I often

wore them during the day because my wrists felt so much better if

they weren't moving. With the splints, though, you have to be

careful to do physical therapy, because it just contributes to

losing range of motion. So the benefit is you don't get contractures

in the wrong position, but you also lose more range of motion in the

wrist. I've pretty much gained back the ROM in my wrists, but there

was a while when I couldn't really move the left wrist at all, and

the right was minimal.

Anyway, just thought I'd share my experience.

Elisheva

[Guest guest]

Elisheva, Thank you for your support. I remember from an earlier post that

you had injections done on your wrist. If the enbrel doesn't help within

the next two weeks, we still have the injections and the ped. ortho appt in

our back pocket. I had called Georgina, but she wasn't home, for I knew that

Josh had major wrist problems before. Josh and n are the same age, so

I figured Georgina knew what I was dealing with( a turbulent teenager).

n has had jaw problems before, but it was fleeting. I hope yours is

the same. Good luck, (n,15,systemic)

Re: (n's Mom) about wrist issues

> Hey

>

> Sorry to jump in on this conversation but I've had a lot of

> experience with my own wrists so I thought I'd chime in. I've had

> multiple injections, particularly in my left wrist, and they

> definitely helped a lot, although it eventually wore off. I also had

> splints that were for after injections and at night, but I often

> wore them during the day because my wrists felt so much better if

> they weren't moving. With the splints, though, you have to be

> careful to do physical therapy, because it just contributes to

> losing range of motion. So the benefit is you don't get contractures

> in the wrong position, but you also lose more range of motion in the

> wrist. I've pretty much gained back the ROM in my wrists, but there

> was a while when I couldn't really move the left wrist at all, and

> the right was minimal.

>

> Anyway, just thought I'd share my experience.

>

> Elisheva

>

>

>

>

>

>

[Guest guest]

,

I am so sad to hear that n is having such difficulties. I

always think of her as the " flare in the winter and good otherwise "

child. I don't know how I didn't know she hasn't been well the

whole summer. I'm sorry the mtx didn't work and sure pray that

enbrel kicks into high gear quickly!!! Hopefully n will become

another poster child for Enbrel success. Poor child can't

write...school starting... how awful for her. I hope you're getting

all the advice you need from the list.

Stacia and Hunter 8 systemic, iritis