Moose Posted August 20, 2004 Share Posted August 20, 2004 I've had Parkinson's for about five years now. When I was first diagnosed I was put on a drug called pergolide. I was on that for a couple years when they found out it causes heart damage. So, they put me on rasagiline....which has done a great job for me since I'm still in the early stages of the disease. BUT, now they are asking me if I want to be a part of a study with a new drug, apokyn. The medicine I'm on now has kept most of the shaking and tremors down to almost nothing, and it's an oral drug. Apokyn is injected, just like insulin. I hate needles...and there is no guarentee that it's going to work. BUT, if it does work, and hopefully it does, it's supposed to be put in oral form. I won't have to pay for it at all, ( Currently I spend around $350.00 a month on meds ), and I could be helping a lot of other sufferers. Should I go ahead and do it, or stay with what I'm on now and remain in my, "Comfort zone"? A part of me wants to do it, but then another part of me is saying there are other ways they can do this and I shouldn't chance it. What would you do? Link to post Share on other sites
HokeyReligions Posted August 20, 2004 Share Posted August 20, 2004 Can you go back to rasagiline if your symptoms reappear? Is there a chance that the new drug may cause the rasagiline to not be effective for you should you go back to it? How long is the study? What side effects of this new drug are they already aware of? How will you be monitored? How often/inconvenience will you need to check in? What training do they provide for self-dosage (give yourself shots?) I hate needles too, but you may be able to get used to that, depending on how and where and how often its done - and what type of syringe. There are new diabetic implements that deliver medicine without an actual needle -- I forget what they are called though. Can this be administered like that? What are the projected benifits of the new drug vs. rasagiline? Or is the new drug a lateral or replacement only for rasagiline (for people who don't respond to the rasagiline) Link to post Share on other sites
Fayebelle Posted August 20, 2004 Share Posted August 20, 2004 Why do you have to start w/shots if an oral form is available? Or is that just in development? Link to post Share on other sites
Author Moose Posted August 20, 2004 Author Share Posted August 20, 2004 Yes, I can go back to the rasagiline if it doesn't work. I'm told it'll take about six months to complete the study, six months of needles in my arm. I haven't been told how often I'll have to go in, but they just draw blood to monitor it. They really haven't said much about side effects and I really didn't think to ask. But you did put some great questions in my head, thanks. Right now there isn't an oral form of it, but it's supposed to do the same job as rasagiline without the hallucinations that are commonly linked to it. Link to post Share on other sites
wideawake Posted August 20, 2004 Share Posted August 20, 2004 Give it a shot Moose. Some of the recent studies are pretty amazing on this stuff. A randomized, double-blind, placebo-controlled trial of subcutaneously injected apomorphine for parkinsonian off-state events. Arch Neurol. 2001 Sep;58(9):1385-92. PMID: 11559309 [PubMed - indexed for MEDLINE] Antiparkinsonian effects of BAM-1110, a novel ergoline derivative, in MPTP-treated cynomolgus monkeys. Clin Neuropharmacol. 1998 Jan-Feb;21(1):35-40. PMID: 9579283 [PubMed - indexed for MEDLINE] Supplementary and primary sensory motor area activity in Parkinson's disease. Regional cerebral blood flow changes during finger movements and effects of apomorphine. Arch Neurol. 1992 Feb;49(2):144-8. PMID: 1736846 [PubMed - indexed for MEDLINE] Link to post Share on other sites
Author Moose Posted August 20, 2004 Author Share Posted August 20, 2004 Wideawake, Where can I go to look at your resources? Link to post Share on other sites
wideawake Posted August 20, 2004 Share Posted August 20, 2004 For those that wonder where we find the scientific studies that quote, referenence, and refer to, here is a link to PubMed -- the best free resource for this purpose, that I am aware of: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi It is a huge searchable database of the abstracts of basically every study since about 1970. As an fyi - I did a search there for "apomorphine hydrochloride Parkinson’s" Link to post Share on other sites
Artifact Posted August 20, 2004 Share Posted August 20, 2004 Moose, From reading your other posts it is obvious you and your family are close. Ask your wife about it too. If the previous clinical studies that wideawake pointed out sound promising to you, and the issue is the needle, the side effects, the possible temporary changes in your life while you get adjusted, then maybe you can ask your wife to administer shots, or just be extra moral support. Link to post Share on other sites
wideawake Posted August 20, 2004 Share Posted August 20, 2004 For what it's worth. I have a couple of buds that are diabetic and they give themselves the subQ shots all the time. They can shoot in the thighs, abs, etc... and it doesn't seem like it's painful at all. It's a REALLY small little needle on the special syringe, and it only goes into the skin a little bit. I know that's not much help, but it's just another 2 cents Link to post Share on other sites
HokeyReligions Posted August 20, 2004 Share Posted August 20, 2004 Originally posted by Moose Yes, I can go back to the rasagiline if it doesn't work. I'm told it'll take about six months to complete the study, six months of needles in my arm. I haven't been told how often I'll have to go in, but they just draw blood to monitor it. They really haven't said much about side effects and I really didn't think to ask. But you did put some great questions in my head, thanks. Six months really isn't so long (I'm sure it seems longer when needles are involved!) and if you get some answers about the safety of the product and the side effects that are satisfactory to you, I would lean toward encouraging you to participate. Ask them more questions first! My husband was asked to participate in a diabetes study a while back. He declined because there was a possibility that he would receive a placebo and if that happened, the disease could do irreparable damage to his body before he was able to restart his glucophage again. That risk wasn't worth it, because as he is now, he has no major damage to any organs and he is maintaining quite well. What about your study? I'm not as familiar with Parkinsons and the affects on organs, etc. What would happen if you were not on any medication for this? Could there be irreparable damage? Link to post Share on other sites
Author Moose Posted August 20, 2004 Author Share Posted August 20, 2004 Poking a needle into my arm or anywhere else in my body is an issue to me. But not as much as an issue as what if it doesn't work? Nothing is worse about Parkinsons when you're trying to relax and your whole body aches because your muscles have been working all day even if you haven't. My wife is very supportive, and I know she'll give me the shots if I ask her to. Shoot, if it weren't for her I'd be in a bigger mess!!! With that being said, I don't want this to be another burden on her either. Wideawake, you did comfort me, so it was worth your efforts....thanks! I'm impressed about the studies and I do think I'm going to go through with it. I just hate changing meds again especially when what I've been doing has been working so well. I guess I'm just afraid to leave that comfort zone...you know?? Link to post Share on other sites
Artifact Posted August 20, 2004 Share Posted August 20, 2004 My dad is in between two meds right now for bipolar. He was very nervous to change, because the results he had with the old one was great, but this new one is supposed to be more reliable and (a concern you had too, Moose) much cheaper! So he is still in that 'feeling weird, no quite myself' stage, but is just waiting it out. Leaving the comfort zone is hard, but it sounds like the more you know about your study the better you will be able to judge. Good luck to you on you new medicine (if you decide to go that way)! Link to post Share on other sites
wideawake Posted August 20, 2004 Share Posted August 20, 2004 Originally posted by Moose My wife is very supportive, and I know she'll give me the shots if I ask her to. Shoot, if it weren't for her I'd be in a bigger mess!!! With that being said, I don't want this to be another burden on her either. Wideawake, you did comfort me, so it was worth your efforts....thanks! I'm impressed about the studies and I do think I'm going to go through with it. I just hate changing meds again especially when what I've been doing has been working so well. I guess I'm just afraid to leave that comfort zone...you know?? Totally man. But it sounds like it's the right thing to do. I've had to give an insulin shot to a buddy of mine before and it's pretty easy (your's would be the exact same thing, except with the Apokyn instead of the insulin). You just kind of pinch the skin (in his stomach in this case) between your fingers and poke the little needle into the folded skin. Than boom you squeeze down and it's a done deal. Did you read about some of the other side effects of the Apokyn? Specifically how it effects the 'male' type things? Dude...after reading some of those studies, I want to try the stuff... Just kidding, but it was interesting the one of the only side effects was a propensity for longer and greater erections. Link to post Share on other sites
Author Moose Posted August 20, 2004 Author Share Posted August 20, 2004 Wideawake, You're funny....hehe, I couldn't find where that was a side effect. But don't tell the wife, she complains about that enough as it is!!!! Link to post Share on other sites
wideawake Posted August 20, 2004 Share Posted August 20, 2004 Originally posted by Moose Wideawake, You're funny....hehe, I couldn't find where that was a side effect. But don't tell the wife, she complains about that enough as it is!!!! She's in trouble than bud! Here's one where it's being compared to Viagra or one of those new erectile drugs (not sure which one...but's it either viagra of the levitra) The sildenafil was better for the erectile function, but not by much. An open-label, randomized, flexible-dose, crossover study to assess the comparative efficacy and safety of sildenafil citrate and apomorphine hydrochloride in men with erectile dysfunction. BJU Int. 2004 Jun;93(9):1271-5. PMID: 15180621 [PubMed - indexed for MEDLINE] This one is really good! Clinical experience with apomorphine hydrochloride: the first 107 patients. J Urol. 2003 Dec;170(6 Pt 1):2352-5. PMID: 14634414 [PubMed - indexed for MEDLINE] more... Dopamine D1 receptor agonists induce penile erections in rats. Eur J Pharmacol. 2003 Jan 26;460(1):71-4. PMID: 12535862 [PubMed - indexed for MEDLINE] Combination therapy for erectile dysfunction: a randomized, double blind, unblinded active-controlled, cross-over study of the pharmacodynamics and safety of combined oral formulations of apomorphine hydrochloride, phentolamine mesylate and papaverine hydrochloride in men with moderate to severe erectile dysfunction. Int J Impot Res. 2002 Feb;14(1):54-9; discussion 60. PMID: 11896479 [PubMed - indexed for MEDLINE] Link to post Share on other sites
Matilda Posted August 21, 2004 Share Posted August 21, 2004 Subcutaneous shots are very easy to give, and as wideawake says, the needle is very tiny. The shots don't hurt much because they are going into fatty tissue which is loose and spongy. Good luck to you in making your decision. Ask as many questions as you can, and read up on it as much as you can too. You may already be familiar with this, but here is a link to a Parkinson's disease forum. I have used these forums quite frequently due to my son's disability. (They have forums for all kinds of neurological issues at this site.) You may want to ask your question there. http://brain.hastypastry.net/forums/forumdisplay.php?f=199 Here is what came up when a did a search for apomorphine (Apokyn) on the Parkinson's forum: http://brain.hastypastry.net/forums/search.php?searchid=148491 Link to post Share on other sites
Author Moose Posted August 23, 2004 Author Share Posted August 23, 2004 Ok, After talking to the wife, and with her understanding me....(the fear of change I have), she feels that we should ask for more time. The reason why is our 16 year old started his college courses a couple of days ago and she's already on edge about that. With me, "leaving", my comfort zone she foresees more stress on her part and she's not ready for that.....yet. She's all for the study, but for right now, we're going to ask for another month or two to go ahead and try it. This also give me more time to do more research on my end. Thanks for everyone's input....I love this site!!! Link to post Share on other sites
Matilda Posted August 23, 2004 Share Posted August 23, 2004 Oops , I just realized the link for the search doesn't work. You will have to set up a user name and a password on that forum to do a search. I promise there were quite a few threads about apokyn. Link to post Share on other sites
Author Moose Posted August 23, 2004 Author Share Posted August 23, 2004 Thanks Matilda, I added it to my list of sites to study.....we apprecitate it!! Link to post Share on other sites
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