Re: RA and allergies

[Guest guest]

I'm so sorry you are having reactions to medications! I am like that with

antibiotics. Out of all of them, I can only take 2 and I am becoming immune to

one. I take Plaquenil with Sulfasalazine 3000mgs and an NSAID. We are about to

add Methotrexate or Enbrel. Would orencia be an option? Or some on here have

mentioned taking an antibiotic treatment...

flatsurfacesyndrome <flatsurfacesyndrome@...> wrote:

Hello, I am new to your group and was hoping that someone may have

some advice for me. I was diagnosed with RA about ten years ago and

have had trouble finding a med that works for me. I am currently in

between meds due to an allergic reaction. I take plaquenil as my main

stay but it is not enough. I tried sulfasalazine and got results for

only a short amount of time. They then tried Enbrel which was amazing

for the first four months and then I had an allergic reaction. Each

shot I had my lips became more and more numb then one morn I woke up

covered in a rash and could not feel my lips or the roof of my mouth

and I became horse. Next they put me on Methotrexate but I was in bed

two days a week with side effects. Then they tried arava and that was

going ok until my liver levels became sky high. They then tried MTX

by injection. After the second injection I became horse the third

injection I was horse and short of breath with discomfort in my chest.

The Dr. sent me to consult with the Allergist and he said no way

should I continue because of my history. (I have had other

anaphylactic reactions to meds) That also rules out Humira and

Remicaid. The Dr. is waiting for me to call back with an answer from

the allergist but I am feeling too emotinal to call her because she

said I was running out of options. Anyone out there know of any other

meds that have helped? I have been on prednisone for about 3 months

now also. The longer I wait the more pain I am in. It is in my

feet(had surgery in the R foot in 2004 and it is already back to

presurgery condition) I also have it in my neck back and knees.

Sorry if I rambled on too long.

[Guest guest]

I have not heard of orencia or any antibiotic type treatment. Thanks

for the info, I will look into that and check with my allergist. My

Rheumy called today and wants to see me on Thursday to discuss what to

do next. Have heard good things about Brigham and Womens hospital in

Boston and was thinking of looking into the research they are doing there.

Good luck with the Enbrel. I was completly pain free while I was on

it!! Too bad my body decided to reject it.

Hello, I am new to your group and was hoping that someone

may have

> some advice for me. I was diagnosed with RA about ten years ago and

> have had trouble finding a med that works for me. I am currently in

> between meds due to an allergic reaction. I take plaquenil as my main

> stay but it is not enough. I tried sulfasalazine and got results for

> only a short amount of time. They then tried Enbrel which was amazing

> for the first four months and then I had an allergic reaction. Each

> shot I had my lips became more and more numb then one morn I woke up

> covered in a rash and could not feel my lips or the roof of my mouth

> and I became horse. Next they put me on Methotrexate but I was in bed

> two days a week with side effects. Then they tried arava and that was

> going ok until my liver levels became sky high. They then tried MTX

> by injection. After the second injection I became horse the third

> injection I was horse and short of breath with discomfort in my chest.

> The Dr. sent me to consult with the Allergist and he said no way

> should I continue because of my history. (I have had other

> anaphylactic reactions to meds) That also rules out Humira and

> Remicaid. The Dr. is waiting for me to call back with an answer from

> the allergist but I am feeling too emotinal to call her because she

> said I was running out of options. Anyone out there know of any other

> meds that have helped? I have been on prednisone for about 3 months

> now also. The longer I wait the more pain I am in. It is in my

> feet(had surgery in the R foot in 2004 and it is already back to

> presurgery condition) I also have it in my neck back and knees.

> Sorry if I rambled on too long.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I wish you luck finding something you can take! I believe the antibiotic that

has been mentioned on here for RA is Monocycline. There are a few on here that

take that so perhaps they might be able to offer some information and advice:)

flatsurfacesyndrome <flatsurfacesyndrome@...> wrote:

I have not heard of orencia or any antibiotic type treatment. Thanks

for the info, I will look into that and check with my allergist. My

Rheumy called today and wants to see me on Thursday to discuss what to

do next. Have heard good things about Brigham and Womens hospital in

Boston and was thinking of looking into the research they are doing there.

Good luck with the Enbrel. I was completly pain free while I was on

it!! Too bad my body decided to reject it.

Hello, I am new to your group and was hoping that someone

may have

> some advice for me. I was diagnosed with RA about ten years ago and

> have had trouble finding a med that works for me. I am currently in

> between meds due to an allergic reaction. I take plaquenil as my main

> stay but it is not enough. I tried sulfasalazine and got results for

> only a short amount of time. They then tried Enbrel which was amazing

> for the first four months and then I had an allergic reaction. Each

> shot I had my lips became more and more numb then one morn I woke up

> covered in a rash and could not feel my lips or the roof of my mouth

> and I became horse. Next they put me on Methotrexate but I was in bed

> two days a week with side effects. Then they tried arava and that was

> going ok until my liver levels became sky high. They then tried MTX

> by injection. After the second injection I became horse the third

> injection I was horse and short of breath with discomfort in my chest.

> The Dr. sent me to consult with the Allergist and he said no way

> should I continue because of my history. (I have had other

> anaphylactic reactions to meds) That also rules out Humira and

> Remicaid. The Dr. is waiting for me to call back with an answer from

> the allergist but I am feeling too emotinal to call her because she

> said I was running out of options. Anyone out there know of any other

> meds that have helped? I have been on prednisone for about 3 months

> now also. The longer I wait the more pain I am in. It is in my

> feet(had surgery in the R foot in 2004 and it is already back to

> presurgery condition) I also have it in my neck back and knees.

> Sorry if I rambled on too long.

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hey there,

I have been in the same boat! Rituxan (infusion) was the only drug that I was

able to tolerate. I had wierd resuls....you are supposed to get results

something like within 3 months or something but me....I didn't see anything for

about 7 months. Medicines that don't cause siezures that they have ever heard of

give them to me. I have had lips that were huge too. There are only 2 pain pills

that I can tolerate - percocet that works for RA only and vicodin that works

only if I have to have surgery. I am NOT the normal patient by far. So I totally

understand. I have never had remicade but my past RA doc didn't believe in it.

Good luck and if you hear of something that can work - PLEASE let me know!!

D.

flatsurfacesyndrome <flatsurfacesyndrome@...> wrote:

Hello, I am new to your group and was hoping that someone may have

some advice for me. I was diagnosed with RA about ten years ago and

have had trouble finding a med that works for me. I am currently in

between meds due to an allergic reaction. I take plaquenil as my main

stay but it is not enough. I tried sulfasalazine and got results for

only a short amount of time. They then tried Enbrel which was amazing

for the first four months and then I had an allergic reaction. Each

shot I had my lips became more and more numb then one morn I woke up

covered in a rash and could not feel my lips or the roof of my mouth

and I became horse. Next they put me on Methotrexate but I was in bed

two days a week with side effects. Then they tried arava and that was

going ok until my liver levels became sky high. They then tried MTX

by injection. After the second injection I became horse the third

injection I was horse and short of breath with discomfort in my chest.

The Dr. sent me to consult with the Allergist and he said no way

should I continue because of my history. (I have had other

anaphylactic reactions to meds) That also rules out Humira and

Remicaid. The Dr. is waiting for me to call back with an answer from

the allergist but I am feeling too emotinal to call her because she

said I was running out of options. Anyone out there know of any other

meds that have helped? I have been on prednisone for about 3 months

now also. The longer I wait the more pain I am in. It is in my

feet(had surgery in the R foot in 2004 and it is already back to

presurgery condition) I also have it in my neck back and knees.

Sorry if I rambled on too long.

ltdavis_jrdavis@...

[Guest guest]

Hi ,

Glad to know (in a sorry kind of way) that there are more of us out

there. My husband says I am the percentage they warn you about.

Seems like I am sensitive to all the good things. I also have

reactions to pain meds. I had a terrible reaction to morphine and

ended up on Oxygen. They told me never to have it again. I had an

anaphylactic reaction to Cat scan dye. That was not fun. I will be

seeing the rheumy tomorrow I'll let you know what they come up with.

Anything she prescribes she has to run by the allergist who has also

been consulting with a specialist of some kind in Boston. Are you

having good luck with the Rituxan? Do you still have other meds you

take as well? As they say, keep your chin up...

-- In , <ltdavis_jrdavis@...> wrote:

>

> Hey there,

> I have been in the same boat! Rituxan (infusion) was the only drug

that I was able to tolerate. I had wierd resuls....you are supposed to

get results something like within 3 months or something but me....I

didn't see anything for about 7 months. Medicines that don't cause

siezures that they have ever heard of give them to me. I have had lips

that were huge too. There are only 2 pain pills that I can tolerate -

percocet that works for RA only and vicodin that works only if I have

to have surgery. I am NOT the normal patient by far. So I totally

understand. I have never had remicade but my past RA doc didn't

believe in it. Good luck and if you hear of something that can work -

PLEASE let me know!!

> D.

>

> flatsurfacesyndrome <flatsurfacesyndrome@...> wrote:

> Hello, I am new to your group and was hoping that someone

may have

> some advice for me. I was diagnosed with RA about ten years ago and

> have had trouble finding a med that works for me. I am currently in

> between meds due to an allergic reaction. I take plaquenil as my main

> stay but it is not enough. I tried sulfasalazine and got results for

> only a short amount of time. They then tried Enbrel which was amazing

> for the first four months and then I had an allergic reaction. Each

> shot I had my lips became more and more numb then one morn I woke up

> covered in a rash and could not feel my lips or the roof of my mouth

> and I became horse. Next they put me on Methotrexate but I was in bed

> two days a week with side effects. Then they tried arava and that was

> going ok until my liver levels became sky high. They then tried MTX

> by injection. After the second injection I became horse the third

> injection I was horse and short of breath with discomfort in my chest.

> The Dr. sent me to consult with the Allergist and he said no way

> should I continue because of my history. (I have had other

> anaphylactic reactions to meds) That also rules out Humira and

> Remicaid. The Dr. is waiting for me to call back with an answer from

> the allergist but I am feeling too emotinal to call her because she

> said I was running out of options. Anyone out there know of any other

> meds that have helped? I have been on prednisone for about 3 months

> now also. The longer I wait the more pain I am in. It is in my

> feet(had surgery in the R foot in 2004 and it is already back to

> presurgery condition) I also have it in my neck back and knees.

> Sorry if I rambled on too long.

>

>

>

>

>

>

>

>

>

> ltdavis_jrdavis@...

>

>

>

[Guest guest]

Hey -

Shoot morphine does NOTHING for me - I had it when I had a hysterectomy and it

was terrible. I recently had minor foot surgery and they gave me demoral and I

had never had that and I thought I was flying in the sky! It was so funny -

luckily it did not last long. But I still laugh at that one. Being that

percentage they talk about is scary because of the " what if's " . But you cross

that brigdge when you get there I guess.

I go from positive RA to negative RA and then to positive Lupus. Right now, I

have a bacterial blood infection, unrelated to RA so I am treating that and

nothing else since right now I appear to have Lupus. I have been told that is

normal with RA/Lupus tests for some. Of course, I am one of the " some " . They are

just watching that. Keep me posted on what your RA doc says! Good luck!

flatsurfacesyndrome <flatsurfacesyndrome@...> wrote:

Hi ,

Glad to know (in a sorry kind of way) that there are more of us out

there. My husband says I am the percentage they warn you about.

Seems like I am sensitive to all the good things. I also have

reactions to pain meds. I had a terrible reaction to morphine and

ended up on Oxygen. They told me never to have it again. I had an

anaphylactic reaction to Cat scan dye. That was not fun. I will be

seeing the rheumy tomorrow I'll let you know what they come up with.

Anything she prescribes she has to run by the allergist who has also

been consulting with a specialist of some kind in Boston. Are you

having good luck with the Rituxan? Do you still have other meds you

take as well? As they say, keep your chin up...

-- In , <ltdavis_jrdavis@...> wrote:

>

> Hey there,

> I have been in the same boat! Rituxan (infusion) was the only drug

that I was able to tolerate. I had wierd resuls....you are supposed to

get results something like within 3 months or something but me....I

didn't see anything for about 7 months. Medicines that don't cause

siezures that they have ever heard of give them to me. I have had lips

that were huge too. There are only 2 pain pills that I can tolerate -

percocet that works for RA only and vicodin that works only if I have

to have surgery. I am NOT the normal patient by far. So I totally

understand. I have never had remicade but my past RA doc didn't

believe in it. Good luck and if you hear of something that can work -

PLEASE let me know!!

> D.

>

> flatsurfacesyndrome <flatsurfacesyndrome@...> wrote:

> Hello, I am new to your group and was hoping that someone

may have

> some advice for me. I was diagnosed with RA about ten years ago and

> have had trouble finding a med that works for me. I am currently in

> between meds due to an allergic reaction. I take plaquenil as my main

> stay but it is not enough. I tried sulfasalazine and got results for

> only a short amount of time. They then tried Enbrel which was amazing

> for the first four months and then I had an allergic reaction. Each

> shot I had my lips became more and more numb then one morn I woke up

> covered in a rash and could not feel my lips or the roof of my mouth

> and I became horse. Next they put me on Methotrexate but I was in bed

> two days a week with side effects. Then they tried arava and that was

> going ok until my liver levels became sky high. They then tried MTX

> by injection. After the second injection I became horse the third

> injection I was horse and short of breath with discomfort in my chest.

> The Dr. sent me to consult with the Allergist and he said no way

> should I continue because of my history. (I have had other

> anaphylactic reactions to meds) That also rules out Humira and

> Remicaid. The Dr. is waiting for me to call back with an answer from

> the allergist but I am feeling too emotinal to call her because she

> said I was running out of options. Anyone out there know of any other

> meds that have helped? I have been on prednisone for about 3 months

> now also. The longer I wait the more pain I am in. It is in my

> feet(had surgery in the R foot in 2004 and it is already back to

> presurgery condition) I also have it in my neck back and knees.

> Sorry if I rambled on too long.

>

>

>

>

>

>

>

>

>

> ltdavis_jrdavis@...

>

>

>