My 1st post - lots of fears

[SandyS]

Hi all, I have been reading a lot here since mid December, just now getting around to writing myself. I have had P for 35 years, and due to a lot of steroidal ointment therapies when I was young, a very mild case turned into severe. I had decided for several years to discontinue conventional treatments due to the rebound effects that most had, but have recently decided to try treatment again. I have both P and PA (neck, and toes), and my Rhuemetologist has started me on 15mg/wk MTX and I will be starting Remicade. I fought tooth and nail about the MTX, but he has assured me that it is a low dosage and with monthly blood work if anything starts to go wrong we will see it right away. So far the only side affects that I have noticed with the MTX is drowsiness on the day that I take it, and feeling ill when I try to have a cigarette....which that is not bad, as I really want to quit anyway. Long story short, though, I am still very scared of the potential side effects of both drugs, and just wanted some feedback from those of you who are on it.

Thanks!

[RichJ]

hi sandys,
sorry i can't help much but welcome to the p family. you will met some of the wonderful people on here and will find alot of great info. welcome and nice to meet you. i think more will come through and help with your ?

have a good night all

richard

[Glennmaroney]

Hi I am on 20mg MTX and getting ready to start Remcade next week. I have both P and PA and the MTX by itself has done nothing for the pain. My toes on my right foot are starting to turn to the right. Hurts like the dickins. I do wish you luck and will keep you in my prayers

[MaryJean713]

Hi Sandy,

Welcome to the board, I understand about discontinuing treatment, I refused conventional treatment for about 3 1/2 years because I didn't think that things were getting any better.

I recently came back to conventional medicine, and started on enbrel, one of the biologics, and it has helped my skin, my joints don't feel alot better, but my rheumy thinks that is because I have fibromyalgia as well.

There are ALOT of people on here who have had wonderful success on these medications. Have you or your doctor considered trying them?

MJ

[Emsmom]

Sandy,
My almost 15 year old daughter has been on methotrexate for nearly 12 years and Remicade for just over 2 years. She was on Enbrel for 2 years prior to switching to Remicade. I cannot say enough about these meds. Methotrexate allowed my then 3 year old to be a child again. When the methotrexate alone was no longer enough we added Enbrel then switched to Remicade. Although Emily still has pain at times, she is able to live as a teen should. She plays soccer and is on the high school track team this year. She's even pole vaulting! At my son's wedding last month Emily was able to dance the night away! She was sore the next day but didn't care. There was a time when I wondered if Emily would ever walk without a limp, be able to button her own shirts, etc. Those days are gone, thanks to these meds.
Your doc is right~~ regular lab work will allow any potential problems to be caught early. The best advice I can give you is to remember that the side effects are a possibility, but the damage that untreated or undertreated arthritis can do to your body is a definite.
Liz

[PJ Leary]

Hi Sandy,

I have been a Remicade patient for the past 18 months with excellent results. I am not taking mtx with it as I cannot tolerate it ( learned that years ago ). Before using Remicade I was an enbrel patient for 24 months. Enbrel worked well for the first 18 months, then began to loose efficacy for me.

My fab derm & I tried fooling with the dose & schedule, but I continued to flare both with my skin & my pa. While the enbrel never completely cleared my skin, it was very manageable. It worked very well for the pa, though.

Remicade had my skin clear after about 5 months of treatment, and my pa is under control as well. I wish you the best of luck and hope that you have remarkable results! ( And the same wished for you, too, Glenn! )

Regards,

[mamaooch]

Hello Sandy,
I have both severe PA and pppp. I started MTX in May and started Remicade in July. I am on 15mg of MTX weekly and the main side effect I have with it is the day I take it, I am extremely tired. The Remicade has been very helpful with the pppp as all the lesions on my hands and feet are gone now. It is also helping with the PA, it took a little adjusting the time frame that I take it because I was having a lot of breakthrough pain when I was on the 8 week schedule, so now I go for my infusions every 6 weeks. My next one is this Thursday. The Remicade is really helping, I was on Enbrel and Humira before and they did not help at all.

I understand why you are scared, I was also. But I was more afraid of what this disease was doing to my body, I knew I needed to stop the progression of this disease. The wonderful people on this board were very helpful with their experiences and support (esp. PJ Leary and Mikek). I am 45 years old with 3 teenage boys and I knew I had to do something. Before I was diagnosed I was a runner and that had to stop, but since I have been on Remicade I have been able to go to the Y and do exercises like cycling, walking, lifting light weights and yoga. My Rhemy said exercising helps.

I hope this helps, if you need anything or want to ask me anything just PM me and I will be glad to help you in anyway I can.

Take care and keeps us informed,
Cindy

P.S. Glenn,
Good luck to you this week as you start Remicade. I wish you the best. Take a book to read, because it takes about 2 to 3 hours.

[mamaooch]

Bump this one, so someone else can help Sandy!

Take Care,
Cindy

[FlakeyMatt]

I know these medications can be scary but the can have tremendous effect when used within their guidelines

MTX- One good things about MTX is that it has been used for so many years that physcians know the side effects and how to monitor for them

I would like to stress it is important that you do NOT consume alcohol while on MTX

As for the sick feeling, has anyone advise you about taking folic acid to alleviate that symptom?


REMICADE- I have not taken Remicade but have taken Enbrel for 3.5 years with good results particularly in terms of my PA Many people here have used Remicade with +tive results As with any medication results and side effects will vary by individual To generalize and in my opinion, I belive most of the biologic side effects are exacerbated by pre-existing conditions that would the patient more likely to suffer them.

Sandy Good luck, ask us more questions if you would like and........

Welcome to the Family! FLakeyMatt

[SandyS]

Thanks everyone for all of your support. As for the folic acid, my Doctor has prescribed 1mg/daily, and the upset stomach only happened on the day that it took the 2 doses and the next day. I am still waiting to hear from the doctor about my insurance (I had been approved last month but couldn't start due to Upper Respiratory Infection) and once that is in place I will be beginning the Remicade. My doctor had spoken to me about both Humira and Enbrel, but felt the Remicade would be a better fit for me.

I am very aware of no alcohol with the MTX, funny, I'm not a drinker, maybe 1 - 2 glasses of wine/month, but now that I am on MTX I feel - almost deprived, guess that is the kid in me, tell me I can't have it and I want it.

I'm keeping my chin up, and thanks again.

[web63]

I started out on Remicade.
Then went to double doses every 6 weeks.
Nothing helped, so after about 8 months of Remicade, I went to MTX.
I have now been on MTX for about 5 years.
Not sure of the mg, but it is 1cc weekly.
You did not mention wether you were taking the MTX by pill or injection.
I have heard that the pill form of MTX can make you sick for a day or 2.
If that is the case, try to switch to the injectable.
If the Folic Acid does not help with the fatigue, try Leucovorin <-ms (maybe)
I take only 1 12 hours after my MTX injection.
I am also on double doses of Enbrel, as Humira, even double doses, did not help.
Enbrel seems to be my med along with the MTX.
I get about 6 tubes of blood drawn every 6 weeks.
I am also on:
Cardiazem - High Blood Pressure
Lipitor - High Colesterol
Plavix - Disected SMA :-(
Toporol - Disected SMA :-(
Predisone
Antiinflamitory - for get the name
Then I have Percociet, Vicodin, and Oxyconton for pain.
NO I DO NOT TAKE THE PAIN MEDS TOGETHER :-)

(Edited - because I rattle on sooooo much)
I have P (not that bad) and PA very severe, in fact at my Rhuemy last week, when he loked at my hands, he said we'll skip that part.
He usually rubs each of the joints on my fingers, but when he saw that my fingers were so swolen, that you couldn't even see my knuckles he didn't want to go there.

Thanks,

[SandyS]

Hi all,

I finally got the green light, and had my 1st remicade infusion last Thursday, and a follow up appointment with my Rheumy on Monday. I'm glad I took a book (if anyone wants a recommendation - Eragon was excellent - I read 1/3 of it during the infusion and couldn't wait to pick it up again) - finished it by Saturday and had to run out on Sunday to get the 2nd book - going to be tough though, cause the 3rd isn't published yet).

I have noted a difference in the amount of pain that I have from PA (I have severe PA in Neck - possibly right shoulder but have to get x-rays, mild in left wrist, moderate in 2 toes on left foot & 1 in right foot). Additonally, I had so much energy on Friday, Saturday and Sunday that I had a difficult time getting to sleep at a decent hour Sunday night, so I have been paying the price since then.

As well I have noticed thinning of plaques, particularly behind my ears & on my sides. The scales are noticably thinner, particularly on my legs and scalp. The Rheumy is impressed with the amount of change 4 days after my 1st infusion. I am scheduled to have my second one done on 2/5/07, then it is to be 4 weeks after that for the final of my loading doses.

I am scheduled to have blood drawn on 2/5, I will have been on MTX for 1 month at that time. The side affects from MTX were much milder last week, I guess that I needed to build up Folic Acid perhaps.

Just wanted to give you an update.

Thanks so much for your support.

Sandy

[Kimbercat]

Hi Sandy,

It's so great to hear when something helps someone who was having such a struggle, and dealing with as much pain as you were. It's also impressive that you're seeing such dramatic results so quickly! I hope you continue to improve, feel better with each treatment, and have no side effects. Although not everyone experiences such dramatic results, or any results in some cases, it's reassuring to know that there are more and more drugs and treatments available to choose from, and hopefully everyone will eventually find the one that works safely on them. Thanks for updating, and congratulations! :)

[JesseLou]

Welcome Sandy! I have been taking MTX since January 2003, primarily for PA, as my psoriasis is minor. It has worked extremely well for me, without problems other than the side effects in the beginning that most people have as they are growing accustomed to the drug. My liver enzymes (blood test) have remained low throughout. I don't drink (except on my birthday!) and I don't take OTC drugs that affect the liver, such as ibuprofen.

I know many people are scared off by the label warnings about liver damage, but it's a fact that many drugs have similar warnings, ie: all cholesterol meds, and most people on MTX never have liver problems.

I actually prefer it to the biologics because it has a long track record that provides doctors with a solid template from which to decide on appropriate dosage and monitoring. The biologics do not. I also like MTX because it has a dosage range of 12.5mg to 25mg, and that means it can be adjusted to suit the way the PA is behaving at a given time. Finally, it is taken once a week, which means if there is a problem, you are off it more quickly than something that is given at greater intervals.

There are people here who have been on MTX for close to 20 years. I hope all of this will give you some peace of mind.

[ouchyk]

Jesselou is right.

MTX has had a long history for helping people not only with psoriasis and psoriatic arthritis but a lot of other types inflammatory arthritis. It's almost " gold standard " for many rheumatologists. They know what to look for in bloodwork.

And it's no where near " chemotherapy levels " used to treat certain cancers, SO don't let that word scare you off!!

So glad to hear your responding well!

Hang in there,
Karen