Fwd: an email I received from Kathleen

[Guest guest]

Hi ,

I'm glad to hear you are adjusting to the MTX. I'm sorry about the headaches though, I did not experience them while on the drug. Hopefully your rhuemy will have some answers for you today about the flu symtoms too. I had my second visit with Dr. Franco last week to go over all my blood work. Guess it was a good thin I had gone because I have had this funky cough for the last 3-4 months, thinking it was from nerves, but then I'd wake up gagging and trying to swallow .. thinking the worst of course .. the RP was back! But, thank goodness its not RP, but I do have Chlamydia Pneumonia, which is not sexually but air born transferred and it is basically an infection of the white blood cells. If it goes untreated it can lead to heart attacks. So I'm on a heavy duty antibiotic (which dumb dumb here forgot to take this morning) for a minimum of 3 months, if not longer until it is cleared up. The interesting thing Dr. Franco shared with me was that he tests all of his new rhuemy patients for this when he does initial blood work (and I think he took about 10-12 viles of blood) and 1 out of every 5 patients tests positive for Chlamydia Pneumonia. I asked if he thought there was a link to this and rhuemy diseases and he said he believed there was but no clinical documentation to back up his theory, or something like that! Anyway, I'm working on getting through this .. but everything else is still asleep! I hope you get to feeling better ... i don't have much time to share with the group, so feel free to forward this on. Good Luck and let me know what the Dr. says. Kathleen (CA)

I received this email from Kathleen (in CA) and thought I would share it with the group. Have any of you heard of Chlamydia Pneumonia? I've never heard of it.

Love,

Hi ,

I'm glad to hear you are adjusting to the MTX. I'm sorry about the headaches

though, I did not experience them while on the drug. Hopefully your rhuemy will

have some answers for you today about the flu symtoms too. I had my second

visit with Dr. Franco last week to go over all my blood work. Guess it was a

good thin I had gone because I have had this funky cough for the last 3-4

months, thinking it was from nerves, but then I'd wake up gagging and trying to

swallow .. thinking the worst of course .. the RP was back! But, thank goodness

its not RP, but I do have Chlamydia Pneumonia, which is not sexually but air

born transferred and it is basically an infection of the white blood cells. If

it goes untreated it can lead to heart attacks. So I'm on a heavy duty

antibiotic (which dumb dumb here forgot to take this morning) for a minimum of 3

months, if not longer until it is cleared up. The interesting thing Dr. Franco

shared with me was that he tests all of his new rhuemy patients for this when he

does initial blood work (and I think he took about 10-12 viles of blood) and 1

out of every 5 patients tests positive for Chlamydia Pneumonia. I asked if he

thought there was a link to this and rhuemy diseases and he said he believed

there was but no clinical documentation to back up his theory, or something like

that! Anyway, I'm working on getting through this .. but everything else is

still asleep! I hope you get to feeling better ... i don't have much time to

share with the group, so feel free to forward this on. Good Luck and let

me know what the Dr. says. Kathleen (CA)

> Hi, Kathleen!

> I have kept your email and refer to it often. I have been on the MTX for a

> month. The nausea seems to have improved over time, but the migraine on the

> second day is still a problem. I'm handling it however. I don't think I

> have as much fatigue as I did on the Imuran. It was a killer for me as far

> as having any energy. I am having flu like symptoms, and am wondering if

> that is part of the MTX or if I actually have the flu. I go to my rheumy

> Tues, so it will be interesting to get her thoughts. I'm also wondering if

> she will increase the MTX, or leave me where I am. I hope I don't have to be

> on it longer than you were. At this rate, 7 months seems like a very long

> time, but nothing compared to the years many others in the group have been on

> MTX.

>

> Thanks for your encouragement about this. As you could probaby tell, it was

> extremely scary for me.

>

> Love,

>

>

>

<<Kathleen here, formerly from NY and now in CA. Just want to say first, that even though I don't always write, I read and catch up on the posts on a regulary basis. I want to respond to your methotrexate questions. Remember, we are all individuals and we all respond differently to the medicines we are prescribed. I had an exceptional experience with the methotrexate and after 7 months of treatment and weaning off of the drug, I have been flare free and meds free (absolutely no maintenance doses of anything) for 2-1/2 years now. I don't like to toot my horn, which is another reason I don't post much. I just want everyone to know there is hope for all of us.

If you have only been prescribed 4 pills of 5 milligram methotrexate, you should not experience any hair loss. You will probably experience some upset stomach on set until your body adjusts to it however, you can get something from you doctor for that too. I don't remember taking anything for naseau after the first month or so. After the first 12 weeks of being on the drug and not experiencing any flares, the med was reduced by 5 milligrams and repeatedly reduced every 8 weeks with good blood test results and no flares, until I was completley weaned off. If you are only on 3 mgs of prednisone .. this is a good sign. You might see your liver levels elevated while you are on metho and taking all the ibuprophen (2400 mgs is a lot). I would check with your pharmacist ... I take the prescription version (Anaprox) which is prescription motrin .... not a good mix with the Metho and I received a call from my pharmacist warning me not to mix. So, please mention this to your Dr. All of the rhuemy's are different when it comes to folic acid. Dr. T would not allow me to take any while I was being treated with the metho it some how had adverse effects to the treatment ... so I took it afterwards.

As far as fatique goes, with this low dose, you should only be minimally affected. The first day or metho day, I took the dose in the afternoon, stayed home, and got plenty of rest. I usually took the treatment on Fridays so I had all weekend to rest. By Monday, I was back at the gym ... yet another way, I feel, beat this beast into sleeping. Drink a LOT of water, everyone should no matter what drugs they are on. My mother thought I was a lunatic for exercising while on the treatments, but I prooved her wrong .. Now she agrees it was probably very beneficial, even if you have to force yourself to do it. Once your body adjusts to the drug, so will the fatique levels.

I wish you great success with your new treatments and pray you join the rest of us who have sleeping RP soon. And I wish this for the WHOLE group as well. Take care,

Just me, Kathleen (CA)>>

Hi, Kathleen!

I have kept your email and refer to it often. I have been on the MTX for a month. The nausea seems to have improved over time, but the migraine on the second day is still a problem. I'm handling it however. I don't think I have as much fatigue as I did on the Imuran. It was a killer for me as far as having any energy. I am having flu like symptoms, and am wondering if that is part of the MTX or if I actually have the flu. I go to my rheumy Tues, so it will be interesting to get her thoughts. I'm also wondering if she will increase the MTX, or leave me where I am. I hope I don't have to be on it longer than you were. At this rate, 7 months seems like a very long time, but nothing compared to the years many others in the group have been on MTX.

Thanks for your encouragement about this. As you could probaby tell, it was extremely scary for me.

Love,

[Guest guest]

, thank you for forwarding Kathleen's post. I have never heard of that either. I bet Connie H could fill us in. Connie..... are you out there???? LOL

Kathleen is an inspiration to us all. She has been in remission for.....gosh I think over 2 years. maybe more. Keep up the good work.

.. you take care and get to feeling better. I worry about you. Keep warm and don't over do...

hugs