Update on meds and me

[Red11483]

Hi ladies,
Well I am still taking methotrexate and we have uped the dose from 3 pills to 5 pills and over the course of a month of step down I am prednisone free. I have been off the prednisone 2 months now and am so glad to be rid of it but upping the methotrexate has made me have some nausea for up to 3 days after taking it but it could be worse i guess. I do have some thinning of my hair but thats normal and i am taking prenatal vitamins to help with the hair. We have no miracles but I will say as time goes by that i am on the methotrexate I am having less frequent abcesses occur we are up to 7 weeks inbetween this last time which is amazing considering in febuary I was having drainings once a week. My most recent mammogram in July showed some improvement and less inflammations in the surrounding tissues and my breast specialist seemed happy. My Rheumatologist feels the methotrexate is a year or more long treatment plan and we will adjust the dose as we go. We will adjust my dose when I see him in mid october. I do currently have an abcess that is healing but still weeping some fluid but its not as bad as some of the others. Unfortunately I have let them open on their own instead of drainings honestly i just cant afford them right now but thats life.

Personally I broke up with my bf of almost 2 years I blame the GM partially but its life and we move on to bigger and better things right. He cheated in april and I forgave him and we were working things out but in august I found he was cheating again. Its hard cuz he was a huge support through this and a great friend but that doesnt excuse him being a liar and cheating so I had to let it go. I struggle with this cuz i was so confident before GM but now I wonder wht man wants to deal with this and doubt  myself. I am getting more comfortable with the new me but its a process. Dating is nerve racking with GM though and Im still learning to navigate those waters so bring on any advice u ladies might have lol.

My son is asking more questions about why my boo boo isnt better like when he gets one. It breaks my heart giving half hugs cuz it hurts to get a regualr one. That by far is the thing that upsets me most not being able to freely hug and horse around with my little guy. He is my world and what gets me up out of bed everyday.

Anyway I guess I just needed to get it all out there. Thanks ladies you are my angels and Im so glad i was blessed to find this group and u incredible women.

Nicole

[AiniZayana]

Thank you for your answer. I'd be sure to mention methotrexate to my doctor on my next visit. My mother in law is also insisting on trying some traditional methods. Just trying evrythg now. Good luck to you, too, GBU :-)

[Red11483]

The prednisone step doown depends on how long u have been on it typically the longer your on it the slower the step down as well as strenght so a doc is nest to ask but it could be fine since it was such a short time. As for methotrexate I found 2 articles on it and GM and it sounded promising and my breast doctor agreed and sent me to a rheumatologist to monitor the drugs and my docs communicate about my progress and work together.  You can Google it for more info bit basically methotrexate blocks cell growth and has been used as a form of chemo for cancer patients as well as autoimmune diseases like arthritis. We did a combo of prednisone and methotrexate for 4 months then stepped down off of prednisone and upped the methotrexate.  Its a Long term treatment plan and just adjusting as we go. I say do as much research on options as possible,  find a doctor or doctors u trust, and find a treatment you want to try and advocate for your own care is my advice. There is no magic cure  and not everything works for everyone but there are a few options.  Good luck and feel free to message me if u have more questions.

[AiniZayana]

Hi, I'm new here,so please forgive me if I sound clueless. I keep reading around the forum and hearing from other doctors about the side effects of Prednisone and how you have to cut it down slowly. I was on 10mg Prednisone for 2 weeks and since it doesnt improve my condition, the doctor who prescribed it said I should just stop. No cutting down or anything. Is it because I'm only on a low dosage?
He also said there is no other medication for GM.But this methotrexate you're talking about, what does it do exactly?
Thanks.

[Red11483]

Thank you Jo! Yes sharing definately helps a lot and if my experience can help anyone then I feel better about what I'm going through. Thanks for creating this place for us to share and learn from each other i know i have benefited from the stories and experiences shared by the other ladies.

[JoJo45]

Hi Red -

thanks for being such a faithful contributor regarding your treatment with prednisone and methotrexate - I know you have helped others - hopefully that knowledge makes this crap disease a little less crappy for you :)

so sorry to hear you have had your relationship break up

I know exactly how you feel about having GM and its physical effects, putting a bit of damper on your confidence.  I also think, for me anyway that the whole thing has been such a bizarre trauma that it has effected me psychologically too - certainly makes you question many things.

Anyway I have no dating advice.  I do know that when I have discussed my situation openly, in groups of people, I can see guys take a step sorta back, maybe even unconsciously.  That's ok as I want someone who is evolved and mature enough to know that having health problems does not define a person...so I am just trying to be patient.

I am sure you will do well and in the meantime you have your beautiful son to keep you happy.

Wishing you all of the best, Jo