Author Topic: Immune-compromised and Methotrexate  (Read 491 times)

SjoDry

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Immune-compromised and Methotrexate
« on: July 11, 2018, 01:16:19 PM »
Hi Sjoggie-Mates,

Long time no see. I have been moving my mom (with dementia), from FL. to PA.

I saw my Rheumy today..who convinced me to try a small dosage of Methotrexate. For those of you with CVID or are otherwise immuno-compromised & are on Methotrexate..any infections or respiratory events when taking the Methotrexate? I am admittedly nervous about taking this with only 1 1/3 lung.

How long does it take (in general) to work? He only gave me 10mg per week.

Thanks much.
Take Care!
SjoDry
Sjodry
http://sjodry.wordpress.com/

Female 55 y/o; SJS Primary; CVID; Autonomic Neuropathy: Chronic Digestive/G.I. issues; Leukopenia;Tachycardia; Bronchiectasis; High Blood Pres; R.A.;Chronic Pain; Sub~Q IVIG infusions~Hizentra; Plaquenil; Restasis; Gapapentin; Breathing/nebulizer meds; Pain meds;

irish

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Re: Immune-compromised and Methotrexate
« Reply #1 on: July 11, 2018, 07:15:56 PM »
I was on 10 mgm a week Methotrexate for about 5-6 months back in 2004-5. I had been diagnosed positive by biopsy in 2003. I got MRSA in Feb of 2005 and ended up having a cat scan of my neck to check for abscesses in my throat at this time. The scan went down low enough to pick up the top of my lungs. I got a very anxious call from the U of MN where this took place and they took me to get up their pronto and to stop the Methotrexate.

I went up the next day and had a scan with dye. I had nodules in my lungs, spleen and liver which were called tubercular nodules. I was diagnosed with Mycobacterium kansasii which is a non contagious type of tuberculosis. It is found usually in people with immune deficiencies of differet kinds. They felt the Methtrexate was to blame and put me on Izoniazide, Rifampin and another antibiotic that starts with an I...can't remember it right now. I became allergic to the rifampin and had to go on Bactrim instead. I took 8 of theses pills a da for one year and had a scan every 3 months.

I had no chills, sweats or other symptoms and if I hadn't had the MRSA I possibly coud have died. I was referred to my immunologist in June of 2006 just after I haqd finished the year of antibiotics. I had mentioned to my ENT that I had been on these drugs and had this diagnosis. He was flabbergasted and told me something is wrong caude people seldom get Mycobacterium infections unless immune compromimsed.

Well, good check up by my very smart immunologist and tests came back Myasthenia gravis, Hashimotos and severely low t-cells and low IgG levels. My t-cells were as bad as an aids patient but I did not have aids. These low counts were related to autoimmune involvement. He said that is why I got the Mycobacterium infection. I should add that I as diagnosed with Bullous pemphigoid in 2002 by my Dermatopathologist. I ad other blood work then also but no other blood work was positive.

My immuologist put me on IVIG to treat the myasthenia gravis as it was approved for this autoimmune disease. He added that the IVIG would also improve my t-cells and IgG levels which it has. It took many years and I have been on the IVIG since Oct of 2006. My blood work does get all goofy at times so I am still careful about being around hospitals, nursing homes, etc.

Not trying to scare you but this is my experience. Life can throw us a curve at any time and it is up to us to keep abreast of our treatments, etc. Good luck. Irish



Polly

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Re: Immune-compromised and Methotrexate
« Reply #2 on: July 13, 2018, 11:47:54 AM »
SjoDry, I was on Methotrexate when I was first diagnosed with RA. The most important advice I have is to take your prescription folic acid as directed. Methotrexate will deplete your folate, you must take the prescription folic acid. You don't take it on the same day as the Methotrexate and you can't substitute over-the-counter supplements. You didn't mention that your doctor gave you a folic acid prescription; if he didn't, please call and ask about it before you start the Methotrexate.

I only stayed on it for 14 weeks. Each week, after I took it, I got worse. It wasn't a continual worsening, it was like I took a step down every week after the Methotrexate. When I told my rheumatologist that I'd stopped taking it, she said "I'm glad you stopped it" with no explanation. (She talks fast, I didn't have a chance to ask) But other than my RA getting worse, I had no adverse effects other than feeling more tired for a day and a little nausea.

Irish, your experience is very frightening. I'm really happy that you survived it and are here with us! I knew a woman in the UK who was given Methotrexate in chemotherapy dosage instead of RA dosage (so something like 1000mg instead of 10mg), she got sores in her throat, that's when she noticed the label on the bottle wasn't right. The pharmacy had made a mistake. She had permanent liver damage from it and being under NHS, there was no compensation for her injuries.

cccourt1942

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Re: Immune-compromised and Methotrexate
« Reply #3 on: July 14, 2018, 12:07:46 PM »
Hi SjoDry,
    Sorry to hear of your Mom's condition.  God bless you for your intervention and care for her.
    My rheumy has tried to get me to use Metho for over two years.  I started it about 4 months ago.  I started w' 1 mll a week, then 2, 3, , then 5mll.  After 6 weeks of all those doses, I had a horrid stomach problem.  Serious.  Lasted 10 days, lost 11 pounds.  The rheumy took me off the metho immediately upon her learning.  She said it "could".  NOW----it was when it was taken away did I realize how much better I had felt on it.  Was off of it for 3 weeks.  Gastro deferred to rheumy as to metho as culprit...but once again (in nearly 40 years of these horrid attacks) everyone shrugged. And first thing I did was ask for the metho again.  Now then, I am old.  I'm 76...and started it just before I had turned 76.  Don't know if that makes a difference.  When I started back, I was put on 4mll. Been back on it about 2 months.  NO stomach problem.  In those two months I've been thru PRE Hab/PT for upcoming hip replacement and have generally prepared myself for that surgery.  If any symptom has become prevalent it's sleepiness.  I can sleep an hour at 5 or 6 (PM) and still go to sleep between 10 & 11. 
     Why do I take metho:  I have psoriasis.  I don't have plaque type yet, guttate.  My rheumy believes I have psoriatic arthritis.  I do NOT have RA.  There is NO actual test for the psoriatic type.  They say you have it (if you have osteo that is) if you have psoriasis.  Thing is, after I quit work (nearly 72) my break outs have virtually disappeared (Stress anyone???)   It's hard for me to say my physical well being is related to the Metho...I am in great physical shape (for an old woman) and am quite strong.  So is the metho helping me do so well with the PT and at home exercises for upcoming surgery  or am I really feeling better because I'm stronger?  I'll have to wait to see.  I only hope I don't have what some of those others experienced.  I have a young friend, early 50s, whose mom has RA and she does as well.  She wasn't successful with the metho either.  I knew about her before I started with it...and may have put it off due to her experience.  I hope it works...surgery is scheduled for Monday....and then>>>>when it rains it pours>>> both eyes hit the magical point for cataract surgery about two months ago.  So will have those to do after recovery period on hip.  Am having anterior method...will go home after one night.  If I were younger, you're discharged same day.  They keep old people one night to monitor vitals.  Seems like something out of the future.  Then I realize, for me at least, this IS the future.  Ha, ha

OH...Folic Acid...YES>..my rheumy gave me an RX...I already lost so much hair...now I see (and feel) new hair around my hairline...and sides of head...lots of fuzzies.  I say fuzzies as I have curly hair!  Don't do OTC.  Get an RX.

Again, best to you with your Mom.  My daughter is taking care of me next week (well/home healthcare and home/PT) but you know what I mean.  As a mom I appreciate it.  She appreciates you. 

Have a great week end,
ccc
« Last Edit: July 14, 2018, 12:16:26 PM by cccourt1942 »
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

irish

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Re: Immune-compromised and Methotrexate
« Reply #4 on: July 16, 2018, 12:09:01 AM »
ccourt, I hope that you are taking the folic acid with your methotrexate. It is very, very important as it helps to keep a person from having such severe side effects plus prevents fatigue and last but not least, it helps to protect your liver. Also, be aware that methotrexate can affect the lungs in some cases. This is not the norm but if you get a cough or have any problems breathing be sure to get to doctor. Also as your doctor about te folic acid and the effect on the lungs. Not all docs are good at patient education.

I really did feel better on that drug and was upset that I could not take it. If I had know that I had immune deficiency I would not have taken it and I doubt the docs would have given it to me. It is hard when we can feel so ill and be so ill but not look ill. Makes it hard for docs to keep up with us and makes it hard for us to keep up with ourselves that is for sure.  Good luck Irish

cccourt1942

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Re: Immune-compromised and Methotrexate
« Reply #5 on: July 16, 2018, 04:26:09 AM »
I was pleased with the low dose.....will take your advice Irish..thx….but yes...tht I said she gave me Rx Folic Acid.
ccc  (on my way out the door for hip replacement...:) :) )
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

irish

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Re: Immune-compromised and Methotrexate
« Reply #6 on: July 16, 2018, 07:32:18 PM »
Good luck!!! Irish

cccourt1942

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Re: Immune-compromised and Methotrexate
« Reply #7 on: July 17, 2018, 05:48:10 AM »
I’M HOME.  Irish.. medical procedures 2018 are miraculous.  Went @ 9:30. Moved to room @12:30pm.  Dismissed about 6:30.  Had another antibiotic drip to take. THEN the dismissal....which has NOT been improved. :)  home at 9:30pm. I had ANTERIOR method. I hand gone thru PRE Han.  No one could believe what strength & post surgery strength I had. Which is why dismissal.  Three came in say it was up to me but they could/would support my decision. Dtr &!son in law agreed to go home.  Tyl 5 (otc) is Patna med + hydrocodone as needed.  They were adamant regarding don’t be in pain. Took two hycor @2 last night & one this a.m.   does this protocol sound good to you.  I respect your input.  Now I’m tired of texting.  Dtr will be with me while time.  Can work from here. They say if I keep moving I’ll be on cane about 11/2 weeks. Amazing.  To me at least.  Actual hip pain gone.  Only incision discomfort.  ????????????????????????????????
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

lorigacc

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Re: Immune-compromised and Methotrexate
« Reply #8 on: July 18, 2018, 07:33:41 AM »
SjoDry-
Good luck with the Metho. I am have been fighting that battle on whether to start it for a few years now. The Plaquenil is just not doing the trick anymore. My RA has been getting progressively worse and deformities have begun. I have to move on to more serious drugs if I want to stop the damage being done. I am also immune compromised...constantly sick with respiratory issues.  I know if I don't start treating this disease more aggressively, I will regret it...however, I am still the type of person who is very conservative where meds are concerned.  Please let us know how things are going with your treatment, and I will say a prayer for you and your mom.

ccccourt- glad to hear your procedure went well...and hip pain gone.  take it easy, and don't push yourself too hard.  I will say a prayer for your continued recovery. 
Secondary Sjogrens, Rheumatoid Arthritis, Antiphospholipid Syndrome, Osteoporosis, Vertebral Compression Fractures, Kyphosis, Hiatal hernia
   Plaquenil, Forteo injections, Restasis, Prinivil, Ecotrin, Calcium, Vitamin D, Probiotic, Fish Oil

SjoGirl

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Re: Immune-compromised and Methotrexate
« Reply #9 on: July 18, 2018, 06:35:56 PM »
If you are on Plaquenil Mexotrethate can increase the potency to toxic levels. There is no test for Plaquenil toxicity so one only learns they are having issues when they become ill -- this happened to me and I had to stop MTX immediately upon recommendation from a former hematologist of mine. It did not help anyway, Imuran has been far more helpful with very few side effects, if any.
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jazzlover

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Re: Immune-compromised and Methotrexate
« Reply #10 on: July 18, 2018, 07:03:55 PM »
SjoDry .. Sorry to hear about your mom.

I personally would NOT do the metho myself. I HAVE taken it before, but it was doing something negative to me (this was 25 yrs ago so I don't remember) and I stopped it about 2 months or so into it. I will not take it again.

One of my friends just got off of it after being on it for 2-3 months. She has been sick ever since going on it. She regrets having done it.

Polly .. Don't you mean that one should supplement with FOLATE because metho can cause folate deficiency? There's a big difference between folic acid and folate.
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irish

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Re: Immune-compromised and Methotrexate
« Reply #11 on: July 19, 2018, 08:04:54 PM »
cccourt, Will try again.... have lost my post twice already!!

Glad to hear that your surgery went well and you are home. I don't take pain meds..yet. But from past experience as a nurse I know that the secret to good post op is to keep the pain in control. If you take meds in morning and stay on the 4-6 hour regime you should be able to be comfortable with your ambulation.

Most people will vary the number of tablets they need at each dose depending on the way their pain levels change. Most people will have an increase in pain as the day goes on and evenings and nights can be the worse. You can set a clock if need be to keep on your schedule during the night so that you don't wake up early morning in bad pain because you slept so long that you are late for your dose of pain meds.

Also, these pain meds will cause constipation in most cases so stool softeners are usually needed. Actually, prunes and other fruits help also. Also a reminder for all of us that when we take pain meds a lot of them will have Tylenol as one of the ingredients. If we need extra Tylenol, etc make sure to check with your doctor so that you get instructions on how to take your pain med and extra Tylenol. We can't take more that 4000 mgm of Tylenol a day or we can cause liver damage. This may have changed so you should check on it for sure.

My hubby took Tylenol for years for chronic pain and I always had to keep track of him so that he wasn't taking too many. I had post a notes and permanent sharpie instructions on every bottle of Tylenol in the house. He always said being married to a nurse could be a really good thing at times and other times it was a real drag. Good luck Irish

Polly

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Re: Immune-compromised and Methotrexate
« Reply #12 on: July 21, 2018, 12:19:30 PM »
Polly .. Don't you mean that one should supplement with FOLATE because metho can cause folate deficiency? There's a big difference between folic acid and folate.

Folic acid is the synthetic form of folate. When you're prescribed methotrexate, you are also given a prescription, I have the bottle here - it's folic acid, 1mg tablets. I remember that many people tried an OTC supplement and found that it did not work, you have to take the prescription and you have to take it as prescribed (get the timing right so it will prevent the side effects but won't interfere with the desired methotrexate effects). Many people find methotrexate very helpful but it's important to take it correctly.

It was a few years ago, I don't remember much else about it. If you Google methotrexate and folic acid or folate, you'll find a ton of information. This site has a lot of information, it's for RA but a lot of the methotrexate info is relevant to anyone taking it, I think:
( link to copy and paste) rawarrior.com/methotrexate-and-rheumatoid-arthritis/
« Last Edit: July 22, 2018, 03:42:08 AM by Linda196 »

cccourt1942

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Re: Immune-compromised and Methotrexate
« Reply #13 on: July 22, 2018, 09:56:48 AM »
Irish/Others/Postop: Metho thread:

1) glad Irish stated she felt better on metho..but didn't work out.  TO IRISH:  Yes: My RX is for FOLIC ACID 1 MG per day.   To reiterate:  I am on 4mll Metho once a week. I was started on 5 (actually, 3, 4, 5) and was on for 6 weeks.  Violent upset which led rheumy to remove the metho for several weeks.  She and gastro conferred/agreed the metho was not culprit.  BUT AFTER: she did lower 1 mll to the 4mll per week.

2) Several of you mentioned RA--and most metho is Rxed for RA.  I do NOT have RA.  I may not have stated on THIS thread I have PA/Psoriatic Arthritis.  (and Osteo)


3) My metho onset was less than 4 months ago.  We'll see.


Thx all..have nice Sundays.


ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene