I Hate Dialysis Message Board

Dialysis Discussion => Dialysis: General Discussion => Topic started by: nursey66 on January 20, 2014, 08:07:30 AM

Title: Rheumatoid Arthritis
Post by: nursey66 on January 20, 2014, 08:07:30 AM
Any body out there develope Rheumatoid Arthritis after going of anti-rejection drugs ??  My hubby had to stop his immunosupressive meds last summer when he developed aspergillosis ,a potential life threatening fungal lung infection. He needed to get his immune system up to fight the infection. Since then ,he has had 3 flareups of Rhuemetoid arthritis. He went to the an ortho DR, the ER, finally his primary sent him to a Rheumatologist, who said it could be the immune system acting up, this is an auto-immune disease. Going off the meds could of triggered it. Anyway, it's gotten so bad, he can not walk !! Of coarse,it would have to affect his feet-Both of them. Who would of thought ???  They put him on methotrexate ,but that takes months to work. He has pain pills- no help. Uses ice & heat, no help. Just cries in pain when trying to walk. Don't know what to do., very frustrating !! He has never had anything like this before, ever !!!
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on January 20, 2014, 09:21:58 AM
How about some prednisone for quick releif until methotrxate works or it calms down. Prednisone works very fast and usually works well for short periods. I  use it a lot for foot/ankle pain of various causes including RA.
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on January 21, 2014, 05:23:04 PM
You were so right, obsidiannom !!! Called the Rheumetologist yesterday, he wanted to see my hubby ASAP. So we went to the Twin Cities and saw him today. He put him on 30 mg prednisone, to be lowered daily for a few days.He thinks it might be Gout. Thanks for the help. 
Title: Re: Rheumatoid Arthritis
Post by: WifeofDiaylsisPatient on January 21, 2014, 08:26:50 PM
You also might see if the doctor could add Enbrel to the mix.  I have heard that Enbrel and Methotrexate work better in combination.  I have RA and started on Enbrel, the doc added Methotrexate a few months later and that really helped.  Yes, it can take 2-5 months for the methotrexate to get to working good!  I was also on prednisone for a year. 
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on January 22, 2014, 06:10:04 AM
The Prednisone was a miracle !!!! He started it yesterday afternoon, and after pushing him around the hospital in a wheelchair all day yesterday, because he could't walk, he was up this AM walking around the house without even using a cane !!!! It sure worked fast. I'm feeling soooo happy right now, at least for the moment.  Just had to share.
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on January 22, 2014, 08:46:40 AM
I see that a lot on my patients. It works quick and very effectively for certain conditions. (gout is common ) Just make sure to go off it slowely.
I have had patients ask for it before going on vacations so they feel better for a week or 2 . It is a great drug when used for short periods.
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on January 25, 2014, 09:41:09 AM
Is your hubby a dialysis patient ? If so this may be important. Anyone on dialysis and methotrxate should be aware of this.


Clinical Dilemma Over Low-dose Methotrexate Therapy in Dialysis Patients: a Case Report and Review of Literature.

Liu WC, Chen HC, Chen JS.

Author information

Abstract
Myelosuppression is the life-threatening adverse effect of methotrexate. Impaired kidney function is a major aggravating factor of methotrexate-induced myelosuppression. In end-stage renal disease patients, methotrexate therapy must be with cautious because the efficacy of removal of methotrexate by means of dialysis is in doubt. In clinical practice, low-dose methotrexate is still used by clinicians in treatment of dialysis patients with immunological disorders. We reported a 61-year-old woman on continued ambulatory peritoneal dialysis who developed pancytopenia with a nadir leukocyte count of 0.03 x 109/L, leading to severe sepsis after 3 doses of methotrexate, 7.5 mg weekly. We highlighted that methotrexate therapy in dialysis patients, even with low doses could impose the risk of myelosuppression, causing a fatal outcome. Alternative medications to methotrexate might be recommended in dialysis patients.
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on January 28, 2014, 02:46:44 PM
Thanks for the info. Yes, he is currently on dialysis. It seemed to me they were more worried about the dialysis taking the drug out of his system, before it could work than not being removed. He is to take 7.5 mg methotrexate on Fridays after dialysis, just once each week .He does in-center on M,W & F. He sees the Rheumetologist for a follow-up in 3 weeks. I think it was gout, he is fine, since using prednisone.
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on February 05, 2014, 09:29:34 PM
Well, obsidianom, you were so right !!!  After your previous reply,  AND my Hubby starting to get mouth sores & rectal bleeding 2 weeks after starting Methotrexate,  we contacted the clinic , they assure him the dose was so low,  and prescribed a "magic Mouthwash"  yesterday. Today, I got a call from the Dialyisis, where he was having his run. They had called an ambulance, due to unstable & swollen  airway, he was taken to the ER,  his HGB was 5.7,  he was in accute distress,  given 1 unit of blood in the ER, then admitted to the hospital.  The DR came in & said he has Pancytopenia. He says, "we like to put big names on stuff" . I said I knew exactly what it was,  where it came from & that it was a very bad thing.  He did agree & seemed a bit suprised I knew so much about it !!   Thankyou Mr obsidianom !!    His bone marrow is very depressed, not sure what will be done.   When I left late tonight,  they were hanging a second blood bag.  It seems they are pretty worried about infection, cuz the DR said if he gets ANY fever, he will hit him with tons of drugs.  They are blaming the methotrexate,  though he only had 3 doses of 7.5 so far.  The drug was prescribed from a different Hospital !!   At this point, I am soooo worried !!!  Sorry this is so long, today was long & stressful !!
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on February 06, 2014, 02:29:59 AM
This may help. Have they tried Leucoverin(Folinic acid)?

Folinic acid is administered at the appropriate time following methotrexate as part of a total chemotherapeutic plan, where it may "rescue" bone marrow and gastrointestinal mucosa cells from methotrexate. There is no apparent effect on preexisting methotrexate-induced nephrotoxicity.[3

I have seen so many articles on Methotrexate and this exact syndrome in dialysis patients. Using it was a huge mistake.

I am so sorry you now have to deal with this mess the doctors created. I hope and pray things will improve fast . I think there is a decent chance at least. Let us know how it progresses. 
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on February 06, 2014, 04:55:00 AM
This is another example of all the articles on this issue. Your Rheumatologist should know this. I am so sorry. I wish I had pushed you more also.
Its so frustrating when I see doctors hurt patients with dumb mistakes. When this all setlles down you may want to do some butt kicking to the rhuematologist.   He forget the motto, "First do no harm".   
Please hang in and best of luck.

Rheumatol Int. 2011 Dec;31(12):1545-7. doi: 10.1007/s00296-011-2041-5. Epub 2011 Jul 22.

Methotrexate for rheumatoid arthritis patients who are on hemodialysis.

Al-Hasani H, Roussou E.


Author information
Abstract


Methotrexate (MTX) can be toxic to patients suffering from end stage renal disease (ESRD) on hemodialysis even at low doses. This increase in toxicity is more notable in terms of bone marrow suppression in the form of pancytopenia. Many methods of elimination including dialysis itself have been proven ineffective, and alternate treatments with anti-TNF alpha blockers can be considered.
 
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on February 06, 2014, 08:18:40 AM
Yes, the Hemotologist mentioned folinic acid last night , I asked about folic acid & he did say this other one was better at reversing the effects of the methotrexate.  Thanks. It was your post that had us start calling the Drs about this drug ,before he even developed the bad symptoms, he was telling me 2 weeks ago that he 'just didn't feel well'. They kept telling us the dose was so low, but his local Neph did say he didn't want him taking that drug , unfortunatly, it was too late by then.
Title: Re: Rheumatoid Arthritis
Post by: jeannea on February 06, 2014, 08:23:23 AM
I HATE when they say you can't be having side effects because the dose is so low. Not true. I hope he starts getting better soon. It sounds like these docs know the right steps. How awful.
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on February 06, 2014, 08:27:47 AM
I think every dialysis patient should learn from this. ALWAYS check with your nephrologist about any changes or additions to meds.
I have practiced medicine for 25 years and always have called the nephrologists if I am seeing a dialysis patient and want to add a medicine or do any changes in doses. Most doctors just dont know much about dialysis and so if they arent careful when treating a dialysis patient can do a lot of damage.
Let us know how it is going . I really pray he pulls through this. Hang in there.
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on February 13, 2014, 11:00:54 AM
Hubby still in the hospital. His diagnosis- Methotrexate toxicity & drug induced Pancytopinea. His blood lines are starting to come up. H has not had any transfusions for the past 2 days. He is ,however, running a low grade fever, under 101, so today, Infectious Desease Doctors are going to see him. Incredible what those few little pills could to to a person on Dialysis !!!!   I guess his Living -Related -Donor transplant will be on hold for a while.   Thanks for your concern.
Title: Re: Rheumatoid Arthritis
Post by: jeannea on February 15, 2014, 11:17:30 AM
Those infectious disease docs can be great. I find them very helpful. I have found some docs to be willing to call nephrology and others not. I usually just hold onto new prescriptions until I can make the call. I worry more about people who are too sick to do this themselves.

I hope he is feeling better soon. He probably feels rotten right now.
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on February 15, 2014, 11:28:18 PM
Yes, last night his temp went to 103 , the Infectious Desease Doc ordered a partial colonoscopy , done in the AM yesterday, and a full CT scan, which they did at 10:00 PM -last night ! Both tests didn't really show up anything.Now we are waiting for more blood cultures.  Thanks for your concern.
Title: Re: Rheumatoid Arthritis
Post by: nursey66 on February 19, 2014, 05:39:29 PM
Finally took Hubby home from the hospital yesterday. Yay !!! They never did explain the 103 temp on Fri eve, but that was the last temp he had. They have now added 'Systemic Inflammatory Response Syndrome ' to his diagnosis, as well as Drug induced Pancytopenia and Methotrexate Toxicity !!! 13 days in the hospital due to those few little pills. Folks on Dialysis can't be too carful. Actually, obsidianom, it was your post about the lady that died from the pancytopenia & sepsis, that got me started calling his Drs, & the Dialysis center, about what I heard & I thought  he was showing signs. I'm sure that helped get him in a lot sooner, because they were aware of the potential problem.The Dialysis called the Ambulance because they were worried his airway was compromised from the mouth sores.   Hope all those blood transfusions don't complicate his kidney transplant. Thanks all.
Title: Re: Rheumatoid Arthritis
Post by: obsidianom on February 20, 2014, 02:18:50 AM
Glad to hear things are improving. Sorry it had to be so complicated. Hang in there.