I am fast approaching my wits end

[NikkiNicole]

I can't take much more. I feel awful and then I take my MTX and feel worse. The nausea is horrendous and this is from injections ... it's worse than when I was on pill form!! I've had a headache for the past 3 days that is like shooting pains through the front of my skull to the back and now ... there's a lump on my spine between my shoulder blades that could be a cyst but its pushing on my spine and making my neck hurt.

I can't take this anymore.

[Debbie C]

Hey Nikki,why do u have to take the injections instead of the pills ? And it's making you so sick,won't your dr try something else ?
Can't that cyst be removed ? :hug2:

[mrtmeo]

Have you tried another drug, such as rtx?

[NikkiNicole]

I see my doctor on the 20th to talk about RTX. I had to start taking MTX injection because the pills made me feel awful. Well ... now the MTX injections are making me feel just as bad.

[mrtmeo]

I see my doctor on the 20th to talk about RTX. I had to start taking MTX injection because the pills made me feel awful. Well ... now the MTX injections are making me feel just as bad.

Do u know if there is a waiting period where you have to be off mtx before starting rtx?
Perhaps, the dr can start the rtx right away?

[sheasheasmom]

I'm sorry you are feeling so bad. MTX also made me horribly sick. After pills and injections for about 16 months my Dr finally switched me to Rituxin in October and it is so much better. I was able to start it without tapering mtx first and then when my liver numbers went wonky a few weeks into taper I was off mtx immediately. I am still on pred and at 5 mg.
I hated mtx and how it made me feel every weekend. I finally feel like I have some of my life back. Good luck!

Susan
Diagnosed: March 2013

[Pete]

Do u know if there is a waiting period where you have to be off mtx before starting rtx?
Perhaps, the dr can start the rtx right away?

I was on 25 mg/week of mtx when I had my rtx infusions. No problem...

[Pete]

Nikki, that cyst on your back could be a muscle spasm. Hope that's all it is. Have you tried alternating heat and cold on it? Hope you feel better soon.

[me2]

I take both mtx and rtx too.
Sorry you are feeling so bad. After my last rtx infusion I was having bad headaches and on a whim I stopped at Super Supplements to see if they had something for headaches. The hooked me up with a product called Migrelief.
They said they have many customers who swear by it. It worked for me. I use it now at the first sign of a headache and I think it helps.

[annekat]

So sorry you can't seem to catch a break from feeling bad since having this stupid disease. I hope they can get the RTX approved and covered and that it works well for you.

[NikkiNicole]

You are all giving me so much hope that there could be an end in sight to this endless sickness. I just want to feel somewhat normal. I don't need perfect ... just better than this!!!!
I havent' been able to do hot and cold on my cyst but that is in the plans.

[renidrag]

Just hoping you feel a little better today.
Dale

[MikeG-2012]

If you have a good relationship with your doctors, can you talk to someone on the phone and give your honest, heartfelt comments about how you feel, and beg/insist that they do something else?

[marta]

I can't take much more. I feel awful and then I take my MTX and feel worse. The nausea is horrendous and this is from injections ... it's worse than when I was on pill form!! I've had a headache for the past 3 days that is like shooting pains through the front of my skull to the back and now ... there's a lump on my spine between my shoulder blades that could be a cyst but its pushing on my spine and making my neck hurt.

I can't take this anymore.

Have you tried Imuran. It is pretty much at par with MTX, but without the gross side effects. The only 'if' is that you might be one of the ones who are missing the enzyme to metabolize it, but if not, it's totally the cat's meaow (sp?) I've had no problems with it for a single day. And I know I had the option of which to take because their efficacy seems to be parallel.

Good luck. Worth a try.

[NikkiNicole]

Tuesday the 20th is the wonderful day where I will BEG for something to be done. I am trying so hard to live a normal life, to get this weight off, to live ... and I am not doing so well. Yes, I am not as bad off as others. But, it is increasingly frustrating to feel nauseous, dizzy, lethargic, run down, fatigued, gross, feverish, etc.
BTW, the cyst or whatever it is on my back is now red hot to the touch. Has anyone had cysts or anything like this from Wegs/GPA? I am going to stay with the cyst factor because while my husband is worried about a reoccurrence of cancer, I am not. I've heard that cancer tumors do not hurt unless they are pushing on something. WHile my neck hurts farther up from the cyst, the cyst itself is tender to the touch. So, I will continue to call it a cyst.
When Dan suggested tumor, I replied "Its not a tumor!" before I realized how silly that sounded and then I laughed, which made him angry because he thinks I am not taking this seriously!
Does he realize I live with this every day? I am getting depressed because I feel so awful!

[annekat]

I don't know how big that cyst thing is, but I had an infected boil on my back as a teenager that caused a big, painful lump. My mother was obsessed with it and kept putting hot compresses on it and squeezing it a little every day, which hurt like hell, until she finally got the core of it to come out. To this day, almost 50 years later, there is still a hole where that was, though not a huge one. I don't know that it was a cyst, since I just looked that up and it seems that is supposed to involve liquid encased in something. It was probably different than what you have, and yours sounds bigger, if it is pressing on your spine and hurting your neck. But just thought I'd share. I hope you get some relief from that and everything else. The cyst thing doesn't really sound like Wegs, but what do I know? And the 20th is only six days from now, since it's almost midnight here on the west coast!

[mrtmeo]

Could u go to the ER and see if they can figure out if it is a cyst, mrsa, boil, or whatever and maybe take care of it?
Having to many issues to deal with can be too much, but if you can tackle something until you see your dr, it might help.

[alirka]

I'm sorry it's going so badly for you. I remember when I couldn't even stand up because of the nausea and the pain. It will pass. Just do what you can, whatever it is to make you feel better. (Do you have anti-nausea meds?) I'm sorry about the cysts -- that has to be scary too. (for me, the super scary thing was coughing up blood from my lungs as they deteriorated. I couldn't get over that.) Everything seems so overwhelming, especially when your entire body is ganging up on you. Can I do anything for you? I know I'm new to the group and we've never talked, but I'm just in Bodega Bay for a few weeks and I am mobile. Please let me know.

[vdub]

Bodega Bay! What a nice little town! :-)

I don't know about you, Nikki, but I seem to be establishing a cycle of feeling good and then bad. Kind of looks like 6 mo cycle. I was really on a high a year ago, but I knew it wouldn't last. I did everything I could to sustain it by not making any drug changes. I wouldn't even change from one generic to another, but I knew in sep that I was sliding backwards. I think im at the low end now and, if all holds true, I should be heading back up.

I hope that's the case, because, like you, I'm getting tired of feeling bad with no end in sight. But things will change and somehow we'll struggle through to see the brighter side of this damn disease. Hang in there! Maybe I'll come see you this summer. We often stay at the Petaluma CG Station.

[NikkiNicole]

Thanks vdub and alirka!
I am trudging along despite everything in this thread. Everyone knows I work too damn much and it doesn't help with the fatigue and yet ... I was able to do this before. My job is mental, not physical and yes, some thinks it's maddeningly stressful and maybe it is and I don't notice it. I just track my aches/pains/etc in a journal and I can see the difference from meds day etc.
I have cut back on how late at work I will stay (nothing past 3am) and I will see what the doctor says about it on Tuesday. I am scheduled til 1am on my regular days so there's not much I can do beyond that. I try to work dayshifts on my days off so that I am able to sleep normal on those days.
I am making steps towards helping myself. (I'm going to start another thread about it) But, something has to give!

[kaysee]

Just reading this thread and wondering if you have a new plan after seeing your Dr last Tuesday. The lump doesn't sound like a cyst to me. I have have had a few large cycts at times and they were never a painful. Someone else suggested a boil - they are very painful. Let us know what you find out.

[Wegetarian]

Sorry to hear you are feeling so bad. Would splitting the MTX dose into a few days help? I think Alysia was doing that.

Just started on Aza last Friday, and I haven't felt any of the nausea that I had with MTX. If your insurance doesn't cover RTX then there are other drugs that are fairly cheap and might work. (Not really sure why they tried Aza on me instead of RTX, guess they don't want to use RTX that much here due to the costs as we'd only pay about 30 euros per infusion).

[drz]

Sorry to hear you are feeling so bad. Would splitting the MTX dose into a few days help? I think Alysia was doing that.

Just started on Aza last Friday, and I haven't felt any of the nausea that I had with MTX. If your insurance doesn't cover RTX then there are other drugs that are fairly cheap and might work. (Not really sure why they tried Aza on me instead of RTX, guess they don't want to use RTX that much here due to the costs as we'd only pay about 30 euros per infusion).

AZA is less toxic with less risks than RTX and considered a milder alternative to RTX so they usually start with a milder form of an immunosuppressant unless it is a life threatening situation where they need the biggest hammer right now. They like to save RTX for the serious situations where there are no other good alternatives according to my treating doctors.

[im so blessed]

Hey Nikki, keep thinking about you and wondering if anything is improving? Hugs n prayers

[NikkiNicole]

Still dragging ... every day is an uphill battle. I smile, and I push myself along through the day, trying not to whine, moan or groan but then ... I remember how awful I feel.