Previous Thread
Next Thread
Print Thread
Page 2 of 3 1 2 3
Re: Woops messed up... [Re: Thesnakejakw] #280132
03/30/18 09:56 PM
03/30/18 09:56 PM
Joined: Nov 2017
Posts: 29
M
MartinMMM Offline
Registered Visitor
MartinMMM  Offline
Registered Visitor
M

Joined: Nov 2017
Posts: 29
Yes. I can't take NSAIDS either. For 15 years they kept me going but now they cause intense gastritis. Tylenol doesn't do anything for pain in my case. In a sense, there's nothing to be done. Keep trialing biologics until one helps mitigate the pain. I've been doing yoga to help with pain and maintain flexibility. And please understand: I hate the pain. It's awful, it often keeps me from doing what I want, it interrupts my life, my thoughts, my relationships and my ambitions. I understand about using opioids as a treatment but you've run into a problem. You're going to have to come up with a work around. Either work with the medical system and redevelop relationships there or find alternative pain relief.

Re: Woops messed up... [Re: MartinMMM] #280133
03/30/18 10:11 PM
03/30/18 10:11 PM
Joined: Jun 2017
Posts: 160
T
Thesnakejakw Offline OP
Registered Visitor
Thesnakejakw  Offline OP
Registered Visitor
T

Joined: Jun 2017
Posts: 160
I also suffer from what I believe Is pieceing together is extreme ibs my GI doc told me it could be ibs unsure, I have celiacs disease but blood test showed I followed gluten free diet for a year now. And when the opioids stopped so did my relief , stomach pain got worse and I have more then 5 bowel movements a day... Trying alternative medications for it without much success


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
Re: Woops messed up... [Re: Thesnakejakw] #280136
03/31/18 05:34 PM
03/31/18 05:34 PM
Joined: Jun 2014
Posts: 71
NJ, USA
C
CBMom Offline
Registered Visitor
CBMom  Offline
Registered Visitor
C

Joined: Jun 2014
Posts: 71
NJ, USA
Originally Posted by Thesnakejakw
Cbmom

during the treatment they we're incorporating biologics in the treatment but had to pause for periods of a month or 2 before trying another one because of dangerous skin rashes ect that kept coming and going. The humira ain't just a 10 second burn it is like sticking a knife into me and I can't finish giving the meds even with a numbing swab. So they are switching to the cosyx once every 28 days instead like the humira every 14 days. Plus I don't see why everyone is saying I have addiction problems based on the relief and the information I decided not to share before, even though I was being kind of over zelous....this is first time ever I have even tried the drug and would not of if I was alert. Guess no one really expects mental altered state after 3 months of no side effects and the soma started messing with my memories and I started expierencing short term memory loss and a black out without remembering my actions for days at a time or aware. But hey it's my fault right ?


Even if it was just a mistake, it is VERY unlikely that in the current climate that you will get opioids from a doctor, at least until you can build up a relationship with one and get him/her to trust you. And even then, it may not be possible, considering you used cocaine and meth.

So why not focus on other treatments? If you can't take NSAIDs, you can try Voltaren gel. It is topical and so it shouldn't bother your stomach. But have you tried NSAIDs with a PPI? I have inflammatory bowel disease (IBD) and the only way I can take them is with a PPI (like Prevacid) and Carafate. I get gastritis every now and then but treat it with the Carafate. For me, it is worth it because there are studies that show NSAIDs can prevent progression and also, they really help with pain. And I have severe AS but my IBD isn't so bad.
There are MANY NSAIDs you can try. And you don't necessarily have to take one long-term - just until the biologic kicks in (which can take several months).

Humira is painful - I started it at age 16 and was on it for several years. But what I am saying is that the relief was worth it for at the most 15 second of pain every week (yes, I took it weekly). The syringe is less painful than the pen because you can control the rate of the injection. I used the pen and iced before and after the shot. I did it while watching something so I was distracted.

You can also try heat, try ice, try a TENS unit, try PT - there are many options.

You can also increase Methotrexate if your peripheral joints are painful. If the tablets are giving you GI issues, then try the injection (which is basically painless).

And try Cosentyx and understand that it will take some time to work. And maybe try the syringe this time, if you find the pens painful (though Cosentyx is much less painful than Humira).

Re: Woops messed up... [Re: CBMom] #280138
03/31/18 11:16 PM
03/31/18 11:16 PM
Joined: Jun 2017
Posts: 160
T
Thesnakejakw Offline OP
Registered Visitor
Thesnakejakw  Offline OP
Registered Visitor
T

Joined: Jun 2017
Posts: 160
Well thank you for the advice, yes I have tried celebrex with zantac and omperzole just gives me bad stomach pains and I know what the result of that is.

I can see what the gel does forgot if I tried it or not . And it's a prefilled syringe i'll be getting, i am already on injectable methotrexate which is killing my stomach as is. I try brief periods of ice and heat and I have done 3 visits for PT with no gain , I still do the exercises if I feel comfortable doing so.


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
Re: Woops messed up... [Re: Thesnakejakw] #280139
04/01/18 03:07 AM
04/01/18 03:07 AM
Joined: Jun 2014
Posts: 71
NJ, USA
C
CBMom Offline
Registered Visitor
CBMom  Offline
Registered Visitor
C

Joined: Jun 2014
Posts: 71
NJ, USA
You could try therapy in a pool, or even just gentle exercises in a pool. Massages can also help with back pain - they help relax the muscles (since you can't get a prescription for muscle relaxants). Physical therapists can do massage and loosen up your back, as well as teach you exercises to build muscle, to better support your joints. And insurance will usually cover it. Physical therapy takes a long time to work - it is not a quick fix. You need to do it for weeks to months for it to help with the pain. 3 visits aren't going to do anything.

There are lots of other things pain management specialists can do - have you ever tried joint injections? For example, if your SI joints are very painful, then you can get steroids injected into them. They can also inject steroids into the facet joints of the spine. If the injections are successful, you can have a radiofrequency ablation done - that essentially burns the nerve so you no longer feel pain is that area. It will eventually grow back but it should give you months of pain relief.

They can also do trigger point injections into knots in your muscles, which will help a lot with muscle spasms.

You could also try acupuncture but that you would probably have to pay for out of pocket (though sometimes insurance will cover it).

You can get a cheap TENS unit online and see if that helps. Or you can try one in physical therapy - then your physical therapist should be able to get you one and insurance will pay for it and for supplies.

Opioids are a quick fix - quick pain relief, there is no denying that. But they come with lots of side effects and are no longer available to you. So there are lots of options you can explore but you need to be patient. Most of them are not quick fixes.

And if you are in terrible pain and cannot be patient, then why not ask for steroids until your new biologic kicks in and you can find other kinds of pain management that work for you? Steroids help much more than opioids because they will control the inflammation. You don't want to be on them long-term, but for a month or two, they can help a LOT.

Re: Woops messed up... [Re: Thesnakejakw] #280140
04/01/18 04:15 PM
04/01/18 04:15 PM
Joined: Jul 2006
Posts: 6,587
New York
Banana Offline
Registered Visitor
Banana  Offline
Registered Visitor

Joined: Jul 2006
Posts: 6,587
New York
If you get proper treatment, you will very rarely need anything strong. To describe it as a whoops? LIke how did that happen? You don't remember? Someone shoved the cocaine and meth and other meds up your nose? Sorry, I hope you can see clear that a different effort needs to be done. You will not be able to get opioids from anyone because of your "whoops". So make every effort to try treatment. Really it will help.


Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Woops messed up... [Re: Thesnakejakw] #280152
04/02/18 07:56 PM
04/02/18 07:56 PM
Joined: Jul 2004
Posts: 1,130
United States
N
NotMeToo Offline
Registered Visitor
NotMeToo  Offline
Registered Visitor
N

Joined: Jul 2004
Posts: 1,130
United States
Originally Posted by Thesnakejakw
Oct 9, 2017 ... I am just not a suitable person for biologics at the moment, but could change in the future.

....NSAIDS don't work for me as it causes stomach damage.


Originally Posted by Thesnakejakw
March 30, 2018
Cbmom

during the treatment they we're incorporating biologics in the treatment but had to pause for periods of a month or 2 before trying another one because of dangerous skin rashes ect that kept coming and going. The humira ain't just a 10 second burn it is like sticking a knife into me and I can't finish giving the meds even with a numbing swab. So they are switching to the cosyx once every 28 days instead like the humira every 14 days. Plus I don't see why everyone is saying I have addiction problems based on the relief and the information I decided not to share before, even though I was being kind of over zelous....this is first time ever I have even tried the drug and would not of if I was alert. Guess no one really expects mental altered state after 3 months of no side effects and the soma started messing with my memories and I started expierencing short term memory loss and a black out without remembering my actions for days at a time or aware. But hey it's my fault right ?


You stated that you were on "decent pain relief" until the end of January. Presumably, the overdose occurred at that point and your doctor (quite correctly) refused further narcotic prescriptions. You mentioned that you have been in "constant pain for two months". You also threw in a mention of trying and failing Humira as it is "too painful" and caused "dangerous skin rashes" but it is unclear if that was before or after the overdose. I'm confused by your story. In October you were NOT a "suitable person for biologics" but now 5 1/2 months later you say that they were "incorporating biologics in the treatment but had to pause for periods a month or two before trying another one". How many times did you pause or do you really mean that you stopped the drug altogether? You mention that you are now going to start Cosentyx. If you started Humira after the overdose, and have been off of it for a month or two. Does that mean that you tried one injection? Two? If you were taking it before the overdose, when did you become a "suitable" candidate?

Many posters tried to tell you that you were overdoing the narcotic and muscle relaxant treatment. Honestly I was stunned that any Rheumatologist would prescribe a young, newly diagnosed patient 60MG of Oxycodone a day - 30MG daily is considered quite a high dose - and not have you on a medication that could actually control the disease and let you get off of the opioid. Your doctor may have treated you harshly because he was likely disciplined for overprescribing opioids. You have described the treatment facility as Mayo Clinic-like so Im sure you know that means there is a lot of peer review going on.

As far as your description of the pain associated with the Humira injection - don't you think you are overplaying it just a bit? It is pretty we'll known that the preservative in Humira makes the injection sting. Some people are bothered by it more than others. However, I will leave you with my then 11 year old son's response when his doctor asked him about the pain with the injection: "If that sting hurts people so much they refuse to take the medicine, maybe their spondylitis isn't really too bad." Out of the months of babes. (Of course if there was a "dangerous" skin rash, that would be another story.)


Not Me Too!
Re: Woops messed up... [Re: Thesnakejakw] #280154
04/02/18 11:13 PM
04/02/18 11:13 PM
Joined: Jun 2014
Posts: 71
NJ, USA
C
CBMom Offline
Registered Visitor
CBMom  Offline
Registered Visitor
C

Joined: Jun 2014
Posts: 71
NJ, USA
The Humira injection is going to be changing too. First for pediatric patients and then hopefully for adults. The new formulation is already being used in Europe and most people say it is less painful.

There are things you can do to reduce the pain that I have mentioned - ice before the shot. Distract yourself during the shot. If you can't complete a shot, then have a friend or parent or someone help you. Or try the syringe - you can inject more slowly and some people say that helps. Some pediatric rheumatologists allow parents to add Lidocaine to their kid's shot. That changes the pH of the shot and makes it less painful. Here is a study:
http://acrabstracts.org/abstract/ad...that-is-the-question-a-comparison-study/

I've never tried it because it seems like a lot of trouble for 10 seconds of pain...but you can ask about it. Your rheumatologist may not know about it because it is usually done for kids but you could ask him/her to consult with a pediatric rheumatologist.

By "dangerous skin reactions" do you mean injection site reaction? Like you get a big welt where you did the shot? Because those aren't usually considered dangerous and often will go away with time. You can take Benadryl before the shot to prevent them or at least make them smaller and less itchy. I have had them with both Enbrel and Cosentyx. In both cases, they went away after a few shots.

Re: Woops messed up... [Re: Thesnakejakw] #280155
04/03/18 01:15 AM
04/03/18 01:15 AM
Joined: Sep 2007
Posts: 278
Toronto
Sean O Offline
Registered Visitor
Sean O  Offline
Registered Visitor

Joined: Sep 2007
Posts: 278
Toronto
I am a recovering alcoholic with decades of sobriety behind me. i am only able to be precribed opioids after a long period of abstinence and am only prescribed a relatively low potency painkiller.

Speaking from experience, you are completely responsible for (1) getting into a blackout; and, (2) everything you do in a blackout. If you had committed a crime during a blackout, you would still go to jail. A judge wouldn't buy the "I was in a blackout" defense and neither is any ethical doctors. Those doctors all did rotations in emergency. They are well acquainted with addicts and alcoholics.

No physician with any ethics is going to prescribe you opioids after this unless and until you have an extended period of abstinence and certainly not if you fail to take any accountability for your blackout or what you did during it.


Male, early 50s, Dx AS+ 1991, HLA B27+, Tylenol 3 PRN for flares. Off NSAIDs due to stomach issues. Considering a biologic. SI and thoracic involvement and costochondritis. Many bouts of uveitis. Small bowel issues, anemia.
Re: Woops messed up... [Re: Banana] #280157
04/03/18 08:03 AM
04/03/18 08:03 AM
Joined: Jun 2017
Posts: 160
T
Thesnakejakw Offline OP
Registered Visitor
Thesnakejakw  Offline OP
Registered Visitor
T

Joined: Jun 2017
Posts: 160
Originally Posted by Banana
If you get proper treatment, you will very rarely need anything strong. To describe it as a whoops? LIke how did that happen? You don't remember? Someone shoved the cocaine and meth and other meds up your nose? Sorry, I hope you can see clear that a different effort needs to be done. You will not be able to get opioids from anyone because of your "whoops". So make every effort to try treatment. Really it will help.


Anna



Banna sorry for the late reply I was rather enjoying my Easter off. Okay let me explain. I been regularly taking my medications with no side effects as prescribed. Then I started getting medication interactions between the soma and oxycodone. I reported to the doctor that I was going into episodes of doing stupid things and not remembering like walking with my shirt inside out ect, we agreed to lower the soma dose instead of 5 a day 4 a day for the next month. A few weeks l later I complained again and he did not instruct to change the dose and in fact didn't even reply. You can see where it leads ....






Last edited by Thesnakejakw; 04/03/18 08:29 AM.

Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
Page 2 of 3 1 2 3

Moderated by  ElinAslanyan, RyanMiyamoto 

Powered by UBB.threads™ PHP Forum Software 7.6.2