Just checking in...some changes for me

General
1

HI all,

It has been about 4 or 5 months since I have been on here. It has also been a time of changes for me and the PSA.

It has been the same amount of time since I have re-located from OH to AZ & also since I stopped taking Humira injections.

I have not been getting sick as much and my liver is also thanking me since I stopped the injection. Not taking the Humira & moving to AZ were two huge steps for me.

So far the UV rays have been helping the skin issues associated with the PSA & I do feel like I have a little more energy. The intense heat really helps the pain in my joints. I put some sunscreen on my feet and just let them sit in the sun a few hours a day and I really feel a difference.

My joints do not hurt as bad here. However when we first arrived in AZ I had a flare up & more joint damage happened. Now all my toes look like sausages and hurt non-stop. Being able to wear sandals all day here in AZ has been a blessing.

I have also changed my diet big time & I drink tons of water.

My meds have totally changed. No more Humira or pills.

They have changed to Medical Marijuana & my daily vitamins. I can say that the MMJ has helped the pain with the PSA so much that I can finally get a solid nights sleep & not wake up in pain tossing & turning. It has also helped with the inflammation big time. I also tried some CBD ointments that help.

I still think that I am having withdrawal maybe from only being off the Humira a few months. The Humira advocate and my specialist have had no contact with me since I told them I was not going to take it anymore & was moving to change my lifestyle to live with this disease.

So far the changes have been positive.

Any advice or input would be great.

2

So you feet have swollen up as sausages and you can't even wear shoes. You have permanent damage (though I am not sure how you determined that without an MRI) and constant pain but claim you are better??!! Are you kidding me???!!!

You don't really want my opinion about your post. I am glad the pot is making you feel better but that is about all positive I can say but I do wish you luck.

3

You need to get some "Hong Kong Diesel" guaranteed 31% THC. . Hong Kong is a sativa-dominant cross between sativa favorite Sour Diesel and Sensi Star. You won't even care if you have feet, which is a good thing, you won't. Good luck.

4

Well, I had an MRI on my right foot & toes last year & yes, permanent damage. I guess for the left, I have not had a MRI as of yet. I had a MRI on my hands,wrists,etc.

For me I am doing better than I was 4 months ago. I am just sharing my changes.

Yeah, I am in shitty shape with PSA. The MMJ & UV rays make it more tolerable though. Yeah,I have two positive things that help so it could be worse.

Hey man, an opinion is what it is. I have thick skin, if you have PSA as well I want to learn from what you have been through. Any little bit than can be shared & help another person suffering from the hell of PSA then shoot away ....

5

Hey, Charger, it has been months! I’m glad to hear that you’re finding the MMJ and the climate helpful to you. I was hoping that you would, given the major upheaval you were undertaking to get there!
Be careful, though, of thinking that your PsA is under control. A lessening of symptoms can happen for any number of reasons (including sensible lifestyle changes), but don’t be lulled into thinking that the disease process is under control. Joints that are inflamed can be damaged, and damage is permanent. The only course of action which has been proven to be effective is disease modifying medication.
Don’t want to scare you, my friend, but do line yourself up with a local rheumatologist, just in case. You need that kind of expertise on your side when you have this disease.
Very best of luck to you. Say, have you had any good bike rides in the desert?

6

It's good to hear that your move has gone well and you are enjoying the weather. It's good that the MMJ is helping you get a good night's sleep. But I'm sure that you are well aware that not treating the disease will continue to lead to more damage.

My mom was just diagnosed w/ PsA after many years of being told that it was all osteo in her hands. Almost all of her PIPs and DIPs are horribly disfigured and many are either partially fused or completely fused. Believe me, if she had a choice, she would have taken meds and not had this degree of damage.

You do have a choice, and need to be willing to live with the consequences. If you are lucky, the disease will progress slowly, and permanent damage will be manageable. Not everyone is so lucky.

7

Thanks, The Sativa keep me up though. I like the slumber I get from a good Indica. I am gonna look at the dispensary for some of that Hong Kong Diesel. I want to forget I have feet my toes and ankles hurt so freakin' bad. Thanks .

tlamb said:

You need to get some "Hong Kong Diesel" guaranteed 31% THC. . Hong Kong is a sativa-dominant cross between sativa favorite Sour Diesel and Sensi Star. You won't even care if you have feet, which is a good thing, you won't. Good luck.

8

Those are positive changes but those two kids deserve you fighting the disease with everything you have, doing everything you can to stop the progression. Its not easy, and its not easy being a parent. But you are too young, too intelligent, and have too much going for you to quit.Stay away from the Hong Kong and lean towards a Indica Dominant Hybrid like Blue Dragon (Sour Diesel x Blueberry) and get yourself back on some treatment to prevent that damage. If nausea is a problem talk to your care provider and hang in there. Moving 4000 miles and not taking advantage of everything you can is plumb silly

9

I look at it this way. While on Humira I was sick all the time,my body & even my mental attitude did not like Humaira. I made an educated & informed decision to make the changes I have made. So far I feel for the better. It was a roll of the dice with the injection & I have faced the fact that I have PSA & this is what it is. In my case the treatment was only slowing the progression of my PSA about 20%.

Even though there is no cure & one day I could wake up & not be able to walk (which in my case could be likely) for me, I just accepted the facts and try to live as stress free as possible.

Stoney, for me I have not been so lucky as progression. I have posted some pic's of my fingers. I will have to post some pic's of the toes and my wrist. My hip & knees have been attacked as well. I just have a bad case of it. My skin could be worse and is not so bad, I got the joint damage end of it & it just gets worse, slowly though. Even when I was on Humira. The next step was remicade. No thank you on the remicade cocktails.

I am actually in search of a RA specialist in the Phoenix area if anyone has any connections. Even though I do not want to take the biologics I still see a physician and a specialist.

10

Seenie, yes many rides. It takes me a few minutes to get on & off the bike but I can still safely ride. If the day comes that I can't I have a model that can easily be made into a trike.LOL

The heat,sun & MMJ help so much with the pain management. Yeah, I am scared, I know what can happen & I just have to live & take each day as it comes.

Seenie said

Hey, Charger, it has been months! I'm glad to hear that you're finding the MMJ and the climate helpful to you. I was hoping that you would, given the major upheaval you were undertaking to get there!
Be careful, though, of thinking that your PsA is under control. A lessening of symptoms can happen for any number of reasons (including sensible lifestyle changes), but don't be lulled into thinking that the disease process is under control. Joints that are inflamed can be damaged, and damage is permanent. The only course of action which has been proven to be effective is disease modifying medication.
Don't want to scare you, my friend, but do line yourself up with a local rheumatologist, just in case. You need that kind of expertise on your side when you have this disease.
Very best of luck to you. Say, have you had any good bike rides in the desert?
11

I have not given up, I just gave up being worried about all the side affects that were already taking effect on me. Hey the biologics may be right for you but I would rather not.

Yeah, Sour D & Alaska Thunder F--- (ATF) have seemed to help me with my situation.

tntlamb said

Those are positive changes but those two kids deserve you fighting the disease with everything you have, doing everything you can to stop the progression. Its not easy, and its not easy being a parent. But you are too young, too intelligent, and have too much going for you to quit.Stay away from the Hong Kong and lean towards a Indica Dominant Hybrid like Blue Dragon (Sour Diesel x Blueberry) and get yourself back on some treatment to prevent that damage. If nausea is a problem talk to your care provider and hang in there. Moving 4000 miles and not taking advantage of everything you can is plumb silly

12

BTW,

Just moving around in the pool has helped as well.

13

A lot of us get relief from moving around in pools!




CHARGER73 said:

BTW,

Just moving around in the pool has helped as well.

14

All of that sounds very positive. I get the same trouble with my feet/toes. Flip flops are one of the most comfortable things for me to wear sometimes. It's difficult to make those decisions about medication but you need to do what makes you feel comfortable. I hope killing the pain is enough.

I presume that if at some point you find this isn't enough that you can go back to the rheumy and get things started again on other meds. Keep a new doc in tow just in case you need them. That way there won't be a lot of waiting time if you need to see someone and have to go searching for a new doc.

I went undiagnosed for a long time and then fighting through treatment was a nightmare. In 2 yrs I went from having PsA in one finger and one toe to having it in all fingers and all but 4 toes.

Please keep a close eye on it's progression. I'm really glad you're feeling a little better.

15

OMG sybil, were you reading my mind? I couldn't have better described how the disease had made me feel....just wait til you start the biologics and you'll feel even better!

sybil said:

I went so long untreated and even after diagnosis it has been such an uphill slog to get approved for Humira that I hardly know how to reply, I'll try.

I do think now that I had PsA for a good while before diagnosis. I felt terrible, I did not know why. I didn't feel bad all the time though, there were some good patches. Eventually, and me and my husband both remember this very clearly, I said 'I feel as if I'm dying.' I admit I am capable both of melodrama and self-pity, but that was not the case when I said those words, it was a quiet statement of fact about how bad I'd started to feel, then I got up and went to work.

Then I crashed. Despite the intermittent good periods which things like sunshine, relaxation, new experiences, high morale etc. had helped to bring about, for short spells anyway, eventually I really crashed. Since starting the meds I feel much better even with PsA symptoms. I really didn't know it was possible for me to feel this good in a sustained way and I haven't even started on biologics yet. I've had no repeat of the rapid joint damage I got at the beginning either, as far as I know.

PsA is so variable. It's sneaky, it sticks around and sometimes tells you it's gone away when it hasn't. I think you're playing a dangerous game. Believe me, I hope you win, I really do.

16

Really ? How would you know if I had an MRI or not? How could you make an educated statement that I am not doing better by my own personal health experiences and then you challenge my own personal experiences I share by asking if I am kidding you? I truly regret logging back onto this site.

It would not be so bad if you were not a mod of the site. Great job you do here on the site Michael in Vermont, making people suffering with a disease feel comfortable sharing experiences here on this site.Michael in Vermont, that was me just kidding you.


michael in vermont said:

So you feet have swollen up as sausages and you can't even wear shoes. You have permanent damage (though I am not sure how you determined that without an MRI) and constant pain but claim you are better??!! Are you kidding me???!!!

You don't really want my opinion about your post. I am glad the pot is making you feel better but that is about all positive I can say but I do wish you luck.

17

Charger, please understand that those of us here (particularly the moderators) have not only a great deal of experience with this disease, but we have also seen the damage – physical, mental, career and family – that this disease can inflict. Make no mistake about the adversary which you are facing here: it will wreck your body and steal your life if you let it. And you appear to be letting it do exactly that.



Michael’s “are you kidding?” comment may have seemed harsh to you, but underlying it is genuine concern for you and your family. That concern is borne out of painful experience with a disease which has destroyed joints and ended careers and relationships, put paid to dreams and bankrupted a lifetime of investments of all kinds. You state that you have damage and terrible pain, and yet you seem content to let the disease do what it will with your body, and with your life and the lives of the ones that you love. I’ll say it too: are you kidding?



I think you need to get yourself on a rheumatologist’s list, and think carefully about the battle that you need to fight.

18

Hi Brian, great to hear the move to AZ went well and that you're enjoying the climate and getting some sun on your bones as well as finding some relief in the pool. I've recently started hydrotherapy and it's helping me alot too.

Poor or non-existent sleep is the thing that I found got me down the most and made everything else almost impossible to deal with. And yeah, everything from the pain to the itchy skin is a whole lot worse in the middle of the night. My rheumy put me on just a small 10mg dose of amitriptylene at night and this was enough to lessen my nightime stiffness/pain and make me sleepy enough to get a good nights rest. I don't know anything about MMJ, except what I read on here, but I'm glad it's working for you.

I was diagnosed in March 2012 and have had two horrible years where my PsA has not been controlled and has run riot around my body. Like you I've had treatments, both traditional DMARDS and Humira, that either haven't worked or I've had horrible, ultimately intolerable, side effects ...... and both from the same drug on occasion!

Here in the UK you only get one shot at a biologic. When Humira didn't help me within the 12 weeks prescribed by the treatment guidelines I was told "that's it, all we can offer you now is palliative care" ..... I sat in that doctors consulting room and crumbled, literally I fell apart. My hopes for living with PsA, my body, my future, my marriage, my career, my LIFE taken away from me ........ "palliative care" sounded like a death sentence.

Once I got over the shock, I got angry because I couldn't give up on me. I knew that until I'd tried every treatment, or at least a good few more, that I couldn't stop fighting and believing there is a treatment that could help. And I needed that treatment as soon as possible, before any more irreversible damage was done.

So with the battle lines drawn by the treatment guidelines I fought. And I succeeded to get funding for a second biologic - Simponi (golimumab). GUESS WHAT? No side effects and it is helping, alot. I know it may not work forever, I'll deal with that if/when it happens, but for now I know that I've done my absolute best to save as much of my body from this disease as possible. Yes, there have been many times when I wanted to throw in the towel but this life is not a dress rehearsal.

You are fighting pain every day and your body is being irreversibly damaged. Do you really want what that guarantees your future to be? Please, please think about putting some of that energy into giving another potentially effective treatment a try. One failed biologic doesn't mean there aren't others that will suit you, remicade infusion is the bio of last resort in the UK, so ask your rheumy about all the others ..... insurance permitting you have more options than we do in the UK.

We all make our own choices in life but please think carefully about yours, for the sake of your family if not for yourself. I say this because I care, because I know there is an alternative.

19

Hi Charger,

I can't find the like button at the moment so I thought I'd check in and say hi. I am so happy for you that you are enjoying Arizona and your pot, HA! Funny, I hate the side effects of pot! I am liking this convo. not bc of your discomfort but for the good information I am reading.

It's good to hear from you also. I remember when you were planning your move. I luv AZ. I hope the best for you. I myself am about to start my first biological. I am hopeful and waffle between thinking my PsA disease is not that bad (I've been told that for many years by professionals) and trusting my new Rhuemy in her recommendation. That seems to be my personal "human condition" right now; waffling between different internal opinions about my disease. For me, it's just like anything else in life, a process and a journey. I wish you the best in your decisions and your personal journey Charger. (Sorry if I am rambling. I'm a little tired!)