Hi there, I was wondering just how many years our bodies can cope with all the medications we are on before it starts shutting down? Not trying to be morbid or anything but our bodies are fighting every single day just to function. I am now taking over 80 pills a week and this is increasing all the time.
You are given one medication, then another to help that one, then another for those side effects. I guess I'm just curious as to what the damage will be and just how long will our bodies tolerate all the medications. The disease is horrendous and I am in so much pain, even with pain meds. In the long run will the medication end up making me worse off? I know that no one can really answer that, not even doctors.
I'm just feeling down at the moment. All these medications and still so much pain and restricted movement. What kind of life is this for anyone? I some times wonder what I did to deserve all this. I won't give up though, its not in my nature and I have a beautiful family. I'm just having one of those days. Missing all the things that I wanted to do/used to do but no longer physically can. Having to change my dreams and plans for the future to accommodate my physical limitations and working around taking medications every four hours when I'm awake.
I feel as though I am missing out on life, even though I try to live every day to its fullest. I hate that my children have to watch me go through this and hate that they often remind me its time to take meds again. Its just one of those days........................
I know about 'those days', so sorry this has to affect your young life, but it sounds like you have so much to be thankful for. I know, we can't help but wonder about the meds, but they become a life line. Gotta take them! Just remember that they always have new meds in clinical trials and coming onto the market. Many of the new biologics have less side effects, so they are working on that very problem, so chin up, gal!
I understand how you worry about your children, but it has made them very caring and compassionate, which will take them a long way in life.
So glad you posted, so glad I have a chance to talk to you, and send you my very best wishes for your health.
Hi Chandilli, Can't say I haven't been there. We all have. I still get there at times. Not as much as I use to because I have started on Remacaide. It has been a big help to me. I too worry about the side effects. But there is ALWAYS side effects to everything we take. For example I have had high blood pressure for years. Well it seems that now the medication I have been taking to control my pressure is starting to cause issues with my kidneys. No medication comes without side effects. I too have children that see me in pain. They know I am limited in what I can do with & for them. But they also see me taking care of myself and fighting this disease & not giving in to it. They see my concerns & fears & they see me pick myself up again and battle on. They also know this is hereditary & to look out for it in themselves as well as their children. That is more then I ever knew. I guess what I am saying is our kids are always watching us.....learning from us. I will not always be there for them. So I try to teach them how to deal with life when I am not there to help them through. Also be kinder to yourself....... you deserve it and your kids deserve it too. I will remember you in my prayers tonight. If ever you need to vent I will be more then glad to listen. Stay strong............ HUGS-HUGS-HUGS,Liz
HUGS!!! Thanks for posting. I think most of us wonder about the long term effects of the drugs. My husband and I were talking about it and I said I'd rather be relatively healthy now and enjoy the years my kids are growing up than spend these years in misery in fear of the medications. I'm on Remicade now and it seems to be doing good things for me, which does a lot for my outlook on life. I hope you find something that works for you soon!!!
I agree with nym! I am also on remicade, which has opened up a whole new world of living for me.. I felt like i'd rather take the meds now and live life the best I can.. and "IF" those side affects come.. I can live with the possibility.. I can't live without playing with my kids.. I know that with this disease it's a hit and miss game.. some meds work great for some and don't work at all for others.. WHEN you find your "mix" you'll feel AMAZING.. I pray it is SOON!!! You are NOT alone.. we feel the same way you do.. I hope that is of a little comfort!
OMG Chandilli, I have soooooo been exactly where you are now. Its gunna take a bunch of time, and digging deep down inside yourself to start to be ok with all of this. I think most of us have probably been where you are now. Hope you're feeling better soon.
I think we all wonder about what the drugs are doing to us. I am happy to be on them though. I had to go off everything to have blood tests bad enough to qualify for biologicals. (Stupid rule here in Australia) I was in extreme pain. I couldn't sleep and couldn't walk. I NEVER want to be without the drugs again. I also don't worry about the future too much. What's the point? Anything could happen in the future so just live for the present.
Philly has a great point: you never know what the future holds. There’s no sense borrowing trouble from tomorrow, especially when you’ve got more than your fair share today.
Hi Chandilli! Sorry to hear that you are suffering so much!!! I certainly can relate to what you're saying. The amount of drugs we have to take is enormous and the side effects are a bummer. I've been taking meds for the past 32 years, and the list keeps growing. But I'm still here, and my body is still working despite all the medical problems I have. Just imagine how bad it could be without the meds!!
I'm waiting to get approval for one of the biologics from the health insurance; methotrexate is not helping enough anymore. I have been on disability for the past three years now.
Are you also on anti-depressants? Being depressed makes the pain even worse to handle.
thank you everyone for your replies. Thank you tntlamb for getting what I was asking. Our diseases do a lot of damage to our bodies and then the medications have different side effects too and also put some strain on our bodies and organs too, and eventually our bodies are going to say 'hey I've had enough, no more' and stop working. I guess I should have worded it better lol.
I'm not against medication at all, without it I would be in hospital attached to a morphine pump and miserable. I am still trying to find the right medications for me and I do have alot of pain still and have mobility issues but we are gradually finding our way through the horrid tunnel to the light at the end. I do worry about the effect this disease has on my kids, not only seeing what I go through but the risk of them getting it too. I try to live every day as best I can but some times the what if's do creep in. I love having all you guys to chat too, it really makes a difference to know that I am not struggling alone. Philly I think that is horrid you had to stop all your meds just to get the biologics, I too am an Aussie and would be screwed if I had to stop the pain meds. Thank you everyone, big hugs to all xoxo Bec
I know how you feel, I was just diagnosed with psa, they thought I had fibromyalgea, until the psoriasis flared up. They have me on 8 pills 2.5mg of methotrexate to be taken every Sunday. I am tired and week and nauseas. I was watching my grandson twice a week and decided i was not safe for him, in case i dosed off. I have lost a lot of strength in my arms and legs, feel like i walk on sprained ankles every day. I am only 45, started out with a car accident 6 years ago, 5 hip surgeries and at least 20 cortizone injections, which everyone is telling me how bad they are for your joints as well. Doctors don't seam to care much since that's what they always want to do. They have never worked. Have to have my kidneys and liver checked every two weeks, that scares me. This is all new for me and I am bummed and have been crying as to what my future will be like. Try to keep my ody in motion as much as possible, which helps. We all have to hand in there for our families. Stay strong you are not alone my friend.
Hi Chandilli, I am sorry you are so down and in pain right now. They've given you good advice here...DON'T give up or give in. You have a family, children, a future and reasons to fight each day. I've taken so many pills over the years, and the doctors say I am actually in good health for feeling so crummy! I am a firm believer in only worrying about what you can change, and give the rest of it to the Lord to handle for you. Prayer, meditation, and medication will get you through. We have all felt like giving in from time to time, but what does it really help? What lesson does that teach your kids? They see you being strong and perservering through this illness, and it teaches them a huge life lesson. And, allowing PsA to steal your joy, won't make it better - I won't let it win in my life! I will keep you in my prayers that you come out of this funk, and take it day by day. Keep smiling, praying, hug those babies, keep smiling, look for the joy in each day as you fight the good fight. One day at a time, is all we can do.
Welcome to the group, so sorry you are going through such a trying time, seems a car accident gets alot of us a diagnosis, no matter how slight, seems to really kick up the somewhat sleeping PsA. You have surely been through the surgeries, I hope it has helped.
I hope that you are getting the care that you deserve, as you certainly are due some wonderful care to get you through all of this.
Most of us have gone through injections, seems only some are helped by it, I have reached the point where I no longer have any. I understand how difficult it is trying to keep up with grandchildren, and know that it saddens me not to have them as often, or as long.
I think we have all started on either Methotrexate of Sulfasalazine, I tried both, neither helped, am now on Enbrel and noticing a difference at 8 weeks in. Most of these PsA meds take 12 weeks to feel the full affect, and we too have blood tests, some are in increments of weeks, some months, but it is all part of it.
Staying in motion is very important, you have the right idea.
So glad you joined our discussions, look forward to hearing from you.