Any other newbie afraid like I am to take MTX? I was diagnosed only last month but I have had symptoms of PsA for years and years. I am 43 and blamed my health problems on stress and weight gain. My family doc says I am in denial…I cry everyday but dont tell my husband…I don’t tell anyone how hopeless I feel or how I fear becoming useless. I have 3 young kids and I wonder if I have passed this onto them.
If it makes you feel better, I've taken methotrexate for years, and it has worked well. I've had not side effects other than a little 'morning after' nausea...I have blood drawn every three months to check my liver and kidneys, and I've had not negative results at all regarding that. I will tell you though, that I was scared to death to take it at first, so I feel your worry. It'll be ok!!!!
I know how you're feeling regarding the kids. Mine are 10 and 6 yrs old, and I definitely worry about passing on an autoimmune tendency to my kids. My mom has type 1 diabetes (autoimmune) and I have PsA and possibly Sjogrens.
It is very important to treat the disease. I know that you are worried about the treatment, but the disease can do far worse to you. It may take a few tries to get things right, and there will likely be adjustments necessary as time goes on, but that's okay. I was diagnosed when my little one was 1 year old, and have had fairly slow progression, as I was diagnosed very fast. It doesn't mean that the disease hasn't progressed, simply that it has progressed fairly slowly.
Along with pain, it is not uncommon to experience depression. When the disease and the pain and fatigue get under control, it might go smoother, but I would strongly recommend considering looking into issues related to depression.
I started on MTX in mid-January and at 3 weeks I found relief from pain in hands (but not completely) and some relief from lower back pain. As a few more weeks since that I find more relief from back pain which leads me to believe I had spondylitis on top of my stressed and injured back from a long life of other issues. I was horrified initially upon reading the warnings for the meds. but I have had no side effects whatsoever and feeling good for having taken MTX.
I will probably be starting on Humira in 2 weeks and again encouraged by what I read on this group postings. We help eachother and the more information and list of experiences helps a lot !!
Hello there,
It does sound like you are in denial to a certain extent, but that is quite normal and most of us have gone through the same. As Stoney said, depression can accompany us with this disease.
Most people with any chronic condition will go through a period if grief and adjustment. and as for the MTX? I sat with the tablets in my hand and tears rolling down my face that first time.......it was if it was physically impossible for me to lift my hand up to take them, the horror of introducing this toxic med into my system made me shudder. I gave myself a stiff talking to and took the plunge, and do you know what? It was ok, the world didn't end. I'm here (nearly 2 years after that first dose) I'm independent, I work, I do the housework, I look after my sons (ok, they're grown up but I'm still their Mum and still support one son with severe ADD) I have flares and have had time off sick during them, but I'm so grateful there are meds to help slow down this disease.
My GP had been blunt and told me it was my choice to take the meds or not. But if I chose not to take them I could well be in a wheelchair in the near future, and that I should think seriously about my future and what I wanted.
You need support.....don't cry alone, ask yourself why you cry alone? do you think you don't deserve support?
You do honey, we all do. This is not your fault.
I found when I started to be kinder to myself I started to get to grips with the disease, I started to take control back, I am still the 'me' I always was, just with adjustments and considerations. I researched all I could, listen to advice, took my meds, became a protector of my energy and body......... and I'm here and I'm happy
Good luck x
683-5StagesofAcceptinganIllness.doc (23 KB)I want to add an important point often not made - the dosage level of MTX for PsA is much lower than used for chemo. I find it strange and counter-productive for the drug company warnings to list the worst possibles and make no distinction between levels for chemo vs. lower levels for other conditions.
Also, I checked out the same concerns you have with a relative who is a pharmacist at a well respected medical facility and along with everything I read at this support group - it is much better to take the MTX and other meds. than to live with the PSA and essentially do nothing. You will be much better off taking meds. than not.
Thank you to everyone for taking time to respond…I appreciate the support. I will be seeing my doc on march 4th.
I've been suffering for the last couple of years, but did not want to take mtx, I thought why would I want to poison myself. I let it go and now my toes are all swollen. But the last 4 months my needs have been swollen and it's been hard to walk and my pinky finger has swelled up, so I decided it's time to start something, it's been two weeks since I started mtx and so far no problems, just waiting to do my first blood test to see how it's going.
Hang in there, I also worry about passing it on to my daughter, apparently father's have a greater chance to pass it on, which I am. She has eczema badly at the moment.
Wow Louise!! Excellent post!! Your words were just what I needed to hear! You just helped so many of us with that one!! Many thanks to you! Have a wonderful day!! :-)
Louise Hoy said:
Hello there,
It does sound like you are in denial to a certain extent, but that is quite normal and most of us have gone through the same. As Stoney said, depression can accompany us with this disease.
Most people with any chronic condition will go through a period if grief and adjustment. and as for the MTX? I sat with the tablets in my hand and tears rolling down my face that first time.......it was if it was physically impossible for me to lift my hand up to take them, the horror of introducing this toxic med into my system made me shudder. I gave myself a stiff talking to and took the plunge, and do you know what? It was ok, the world didn't end. I'm here (nearly 2 years after that first dose) I'm independent, I work, I do the housework, I look after my sons (ok, they're grown up but I'm still their Mum and still support one son with severe ADD) I have flares and have had time off sick during them, but I'm so grateful there are meds to help slow down this disease.
My GP had been blunt and told me it was my choice to take the meds or not. But if I chose not to take them I could well be in a wheelchair in the near future, and that I should think seriously about my future and what I wanted.
You need support.....don't cry alone, ask yourself why you cry alone? do you think you don't deserve support?
You do honey, we all do. This is not your fault.
I found when I started to be kinder to myself I started to get to grips with the disease, I started to take control back, I am still the 'me' I always was, just with adjustments and considerations. I researched all I could, listen to advice, took my meds, became a protector of my energy and body......... and I'm here and I'm happy
Good luck x
I reply mainly to give a caution, but first I can report that mtx worked well for me for 8 years. I had regular blood tests and I really felt pretty good. The caution: heed the warnings about the very ill effect of drinking alcohol and mtx-ing. I darn near died from the combination and nowadays, while I don’t drink at all I also did so much damage that mtx is not an option for me; in fact none of te commonly used drugs are. Today my liver and stomach are aces but the PsA is disabling. Free advice, probably worth what you’re paying for it.
Not a whole lot of new wisdom from me, Coach, but yes, we do understand how you’re feeling. Louise said it all! What we have can be a very isolating and frightening disease. Unfortunately, information and support about PsA is rather thin on the ground. Unless you come here, of course! I’m pretty sure I know more about this disease than my GP does. And I can forget about my rheumatologist: she sees me twice a year for a quick check up and prescription review. No support or sympathy there, for sure!
So hang out with us, and we’ll make the best of this.
I'm here! I'm responding to the post about fear of taking the MTX. MEEE TOOO!
Newly diagnosed, after suffering for many years, and scared outa my mind to fill the Rx for MTX. I'm 65 (in a couple months) and female, and most of my life, up to about 17 years ago, I was fit and very active. Depression has set in on me, too since being given the Rx. I'm searching online for alternatives to taking this poison, hoping diet change can effect some change for me. I've read the blog posts over and over, taking their advice to my heart, thinking hard about it. I've only told my partner and he really has no concept of the weight this has on me. I feel for you. I know your hopelessness, I feel it too! But one of the posts I read by Dr Marc has made me think that I need to just gather myself up and go fill this Rx and start this therapy or I'll never know if my life can improve, or if it can change. It might not be "the best therapy" for me, but unless I try, we'll never know. So I'm gonna do it tomorrow!
I'm not giving up on searching out diet changes that might improve inflammation, but I must do what the doctor asked of me and take this med. I hate that I have to do it, but I must.
It's a starting point. I hope you can find strength to try this med, too. It may not be the best for us as individuals, but its a starting point. My thoughts will be with you!!
KBryant
I wish all my PsA peeps a restful night and a pain free morning.
I wasn't afraid..I didn't have a computer in 1995
I cried, when i couldn't hold a magazine, and turn a page, in the waiting room, at my diagnose appt.
It took me 20n minutes, to get out of parking garage, across the street from hospital, and to walk just across the street
even using Charmin was a personal struggle i never want to have again
I couldnt walk up the stairs to get my sons parent-conferance meeting..and i was willing do do anything to get rid of all the pain
mtx been good to me, i am 64, on it 18 yrs
only side affect i have is a extra trip to the bathroom, or i take prilosec
i did get offa it for 3 months last yr, but after liver biopsy, after all those years, it was a fattyu liver..and they let me go back on 6t pills a week now....those 3 months offa it were the worst pain i ever had..especially at night..and taking 40mg prednisone was worse than mtx
sorry if i appear to harsh, but thats how it went
take care.feel better
PS: i realize there are ppl that cannot tolerate, but many can....again don't give up!
Welcome, K! You know, I’ve been thinking. It’s been 18 months since I was diagnosed, at the age of sixty, after about twenty years of being less-than-well. And like you and Coach (and lots of others) I’m still reeling from my diagnosis. It took many years (and a fair amount of permanent damage) before all my diagnostic dots got connected. (And even then, I had to do a lot of the “connecting” myself.) And, like everyone else here, oh how I hate this disease and what it has done to my body and my life. Oh, and the meds … shudder.
But I think we need to look at it this way: we are no different the day after our diagnosis than we were the day before. The only difference is that after the diagnosis, getting better becomes a possibility. After the diagnosis, you can understand why you feel the way you do, rather than wondering whether it’s just because you’re getting old, or you’re overweight, or you’re lazy, or you’re a whuss and a complainer. After the diagnosis, you can give yourself permission to rest and to ask for help, rather than feel like you’re losing a battle you should (and used to) be able to cope with. In that sense, as soon as we get a diagnosis, we get some of our strength and dignity back, even before we find a treatment that helps.
Don’t I sound wise and brave! It’s partly an illusion, self-talk to convince myself, and it does work if you do it long enough.
I was diagnosed a few years ago. It was not bad until after the birth of my third child. I have been going steadily downhill ever since. My rheumatologist put me on NSAIDs but I had to come off of them because of the stomach pain, dizziness and nausea I was having. She insists I have to go on MTX. I am terrified of doing that. My father took MTX and a biologic and died a little over a year later from lymphoma. I don't want to go down that path. However, I must admit it is tempting because the pain is getting so intense and most days I have trouble walking now. It is a very hard decision. It is complicated by the fact that I have many other health issues that are contraindicated for a lot of other therapies....potentially even MTX. I am seeing yet another specialist to decide if MTX is even an option. So it may be decided for me, but in the meantime, I have been doing my homework about the drug, reactions, etc. If only there were a way to know how you might react before you actually take it. :(
I took MTX for over a year and had no problems what so ever. No side effects at all. If it wasn't for the alcohol restrictions I'd still be taking it today. MTX has been around since Moses. It has a long track record of being a safe and effective treatment option.
I am also 43 and diagnosed 5 months ago. I am on the max dose of MXT and weening off of prednisone to start one of three next possibilities. Humira, Embrel, Remicade. My insurance makes me go through the steps or they won’t cover these. MXT helps my psoriasis but does not help much for pain and inflammation. Everyone is different, and although the side effects sound scary it is worth it to go through the meds to find out what works for you. It took me 6 weeks and a major flare to call my Dr. to get prednisone and it worked great. I could clean my house, not limp around etc. then I went back in to my next visit telling him how great I feel and he said he was weening me off prednisone because it doesn’t help joint distruction. Good luck and we’re here for you. Hope this helps in your decision.
Michelle, I was the exact opposite. MTX worked great on the PsA but did nothing for my skin.
Take the MTX. It'll probably not hurt you at all, but if it does, you'll stop the med and you'll be fine.
The main problem with MTX is it's not all that effective on PsA. But that's not such a problem. If it works, great, and you're lucky. If it doesn't take you to 100%, then at that point your doctor can prescribe a biologic. The biologics have lower side effects and they work better. The problem is they're expensive and your insurance company requires that you try the MTX first.