Re: arthritis and mono

[Guest guest]

Holly was very sick one summer when she was in second grade, when she was

8......she is 12 now.........it was mono........she was on mtx and pred and

motrin at the time, we stopped everything for a while and then restarted, but

she was put in the hospital very ill (they stopped the meds at the

hospital)....stayed for a few days, started improving, they sent her home and a

week

later the test came back saying she had had mono.....hope marian feels better

soon!!!!!

Luv and hugs,

Aj and Holly (12 yrs old, systemic jra since 9/94)

_www.caringbridge.org/visit/holly_ (http://www.caringbridge.org/visit/holly)

[Guest guest]

had mono last summer. He continued with his meds. He did sleep a

lot and had more aches and pains than he had been having. It took a lot

out of him and it did take quite awhile before he felt better. He was

dragging for a few months. His first test taken at the end of June was

negative, and then he continued feeling ill. Nothing really we could

pinpoint, more like a sore throat and general tiredness. It continued to

get worse until the end of July when he went for another mono test and

it was positive. No meds they could give, just had to give it time. Plus

with starting college it was tough. I would expect her to feel quite

tired and sick. drank a lot of Gatorade as his throat became quite

sore and we did not want him to dehydrate (again!). He did lose weight

as eating was tough with the throat. I loaded up on soft foods he could

eat. Good luck with her recovery - it just takes time for the body to

recover. I can tell you, slept a lot and looked very tired well

into the fall. He would come home from class and sleep and nap after

work whenever he could. Any help I can be, just ask, Michele (

18, spondy)

arthritis and mono

Has anyone had any experience with mono and JRA? n has systemic

JRA and is on mtx and enbrel. She has been very sick for the last

several days, and we have just found out that she has mono.

Thoughts?? Thanks, (n 17, systemic)

[Guest guest]

Mono can take a lot out of a child and can take months to real get

over. My son had mono a couple of years ago and it took him four

months to really be better.

The problems is that with arthritis and other autoimmune diseases our

kids take immunosuppression drugs which makes them more susceptible to

illness and makes it harder for them to heal from the illness. On the

other hand, without the immunosuppression drus they would be sick and

have no quality of life. Your damned if you do and damned if you

don't.

My son wasn't on methrotrexate or enbral but he was/is on Cellcept,

another immunsuppressive medication, when he got mono and his GI had us

stop it immediately temporarily to give his body a chance to fight the

illness. He said with the Cellcept his body could never have fought

off Mono. Of course, that it is Cellcept and my son, I am not sure how

severe your daughter's immune system is suppressed with the

Methotrexate and Enbrel, but I do know those meds suppress the immune

system. I'm not trying to scare you, I'm just saying it is probably

worth talking to her rheum about it. I know there is a risk of the

disease flaring from stopping the immunosuppression but I personally

thought it was worth the risk.

There are never any really good anwsers are there! :-)

Hope your daughter gets well quickly.

Val

>

> Has anyone had any experience with mono and JRA? n has

systemic

> JRA and is on mtx and enbrel. She has been very sick for the last

> several days, and we have just found out that she has mono.

> Thoughts?? Thanks, (n 17, systemic)

>

[Guest guest]

Correction to what I said before about the drugs. did stop the

methotrexate for a couple of weeks only. Sorry - I had totally forgotten

about that (as I have said before, he is not really compliant with

taking the meds and he was not taking them like he should have been

anyway) but the rheumy did tell us that he should stop it for a few

weeks. I do recall that he was ok to begin taking the MTX again by the

end of August. Sorry about my misinformation before. Michele

arthritis and mono

Has anyone had any experience with mono and JRA? n has systemic

JRA and is on mtx and enbrel. She has been very sick for the last

several days, and we have just found out that she has mono.

Thoughts?? Thanks, (n 17, systemic)

[Guest guest]

Thanks to everyone who responded about mono. We have taken her off

all meds, and will see how it goes. She is extremely sick today.

She is bedridden. We are getting ice water down her, and that is

all. She goes back to the doctor tomorrow, because her platelet

count was down. Now I just have to figure out how to get her there.

She can't even walk. Thanks again. (n, 17, systemic)

On Apr 6, 2006, at 8:37 AM, Tepper, Michele wrote:

> Correction to what I said before about the drugs. did stop the

> methotrexate for a couple of weeks only. Sorry - I had totally

> forgotten

> about that (as I have said before, he is not really compliant with

> taking the meds and he was not taking them like he should have been

> anyway) but the rheumy did tell us that he should stop it for a few

> weeks. I do recall that he was ok to begin taking the MTX again by the

> end of August. Sorry about my misinformation before. Michele

>

> arthritis and mono

>

> Has anyone had any experience with mono and JRA? n has systemic

> JRA and is on mtx and enbrel. She has been very sick for the last

> several days, and we have just found out that she has mono.

> Thoughts?? Thanks, (n 17, systemic)

>

>

>

>

[Guest guest]

Poor kid. Try some cold Gatorade or maybe even one of those meal

replacement things - I am always so worried about dehydration. It is

especially hard when they get older to tell if they are dehydrating.

Even if she can only take small sips at a time, do it frequently. It is

hard to push them, I know. Hopefully tomorrow she will be able to walk

at least to the car - maybe once at the drs office they may have a

wheelchair available. I suppose it depends on where the drs office is.

If she is still really bad tomorrow, maybe call ahead and see. I do

remember one thing the nurse at the rheumy's office told us, to watch

and make sure they can swallow, as the throat can really swell up and it

can cause breathing problems. Not sure why I just thought of that, but I

did. I remember now that Chris' asthma was acting up too with the mono.

If anything more comes to my foggy brain, I'll post it! Let us know how

she is doing, Michele

arthritis and mono

>

> Has anyone had any experience with mono and JRA? n has systemic

> JRA and is on mtx and enbrel. She has been very sick for the last

> several days, and we have just found out that she has mono.

> Thoughts?? Thanks, (n 17, systemic)

>

>

>

>

[Guest guest]

Oh my ...I am so sad to hear how sick n is. I wonder if

she is staying hydrated? As sick as she is I maybe they should be

seeing her today? I am in prayer for you guys and hope that things

turn around soon for her.

(aundrea 10 systemic jra)

>

> > Correction to what I said before about the drugs. did stop

the

> > methotrexate for a couple of weeks only. Sorry - I had totally

> > forgotten

> > about that (as I have said before, he is not really compliant

with

> > taking the meds and he was not taking them like he should have

been

> > anyway) but the rheumy did tell us that he should stop it for a

few

> > weeks. I do recall that he was ok to begin taking the MTX again

by the

> > end of August. Sorry about my misinformation before. Michele

> >

> > arthritis and mono

> >

> > Has anyone had any experience with mono and JRA? n has

systemic

> > JRA and is on mtx and enbrel. She has been very sick for the

last

> > several days, and we have just found out that she has mono.

> > Thoughts?? Thanks, (n 17, systemic)

> >

> >

> >

> >

[Guest guest]

Hi ,

I'm sorry that n is sick. My son Ezra had mono when he was much younger

than n, he was 7. At the time he was on mtx and remicade. He ended up

being hospitalized and was treated with IVIG and IV steroids. It was

scarey.Please keep us posted. All the best. (and Ezra, almost 10 year

old systemic)

On 4/5/06 10:11 PM, " Price " <bc.price@...> wrote:

> Has anyone had any experience with mono and JRA? n has systemic

> JRA and is on mtx and enbrel. She has been very sick for the last

> several days, and we have just found out that she has mono.

> Thoughts?? Thanks, (n 17, systemic)

>

>

>

>

[Guest guest]

One thing about dehydration...Try to give her sips of water every 15

minutes if she can tolerate it. Also make a note as to how often

she is urinating. The doctors will often ask how much fluid you

have gotten into her and definately will want to know how often she

urinates....Watch her closely..Once they get to dehydrated it can be

really difficult to get a good stick for an IV to replenish them

with fluids.

(Aundrea 10 systemic jra)--

- In , Price <bc.price@...> wrote:

>

> Thanks to everyone who responded about mono. We have taken her

off

> all meds, and will see how it goes. She is extremely sick

today.

> She is bedridden. We are getting ice water down her, and that is

> all. She goes back to the doctor tomorrow, because her platelet

> count was down. Now I just have to figure out how to get her

there.

> She can't even walk. Thanks again. (n, 17, systemic)

>

>

>

> On Apr 6, 2006, at 8:37 AM, Tepper, Michele wrote:

>

> > Correction to what I said before about the drugs. did stop

the

> > methotrexate for a couple of weeks only. Sorry - I had totally

> > forgotten

> > about that (as I have said before, he is not really compliant

with

> > taking the meds and he was not taking them like he should have

been

> > anyway) but the rheumy did tell us that he should stop it for a

few

> > weeks. I do recall that he was ok to begin taking the MTX again

by the

> > end of August. Sorry about my misinformation before. Michele

> >

> > arthritis and mono

> >

> > Has anyone had any experience with mono and JRA? n has

systemic

> > JRA and is on mtx and enbrel. She has been very sick for the

last

> > several days, and we have just found out that she has mono.

> > Thoughts?? Thanks, (n 17, systemic)

> >

> >

> >

> >

[Guest guest]

--.

Im sorry to read n is suffering so with mono. It suxs, I had a

pretty bad case of it when I was about 18 and it caused a lot of

enlarged organs. it took me about a year to toptaslly get over it all.

I would me ok one moment and then the next running a 104 temp.

I hope n recovers quickly and it doesnt linger. Keep her well

hydrated.

thinking of you

hugs Helen and (8,systemic)

- In , Price <bc.price@...> wrote:

>

> Has anyone had any experience with mono and JRA? n has

systemic

> JRA and is on mtx and enbrel. She has been very sick for the last

> several days, and we have just found out that she has mono.

> Thoughts?? Thanks, (n 17, systemic)

>

[Guest guest]

HI ,

I am so relieved that her chest xray has improved........i am so worried

about her.........been keeping her in my thoughts and prayers........keep us

posted as you can!!! n