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#278960 - 09/10/17 08:15 AM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: Thesnakejakw]
Winston Online
Registered Visitor

Registered: 06/30/16
Posts: 213
I find it, frankly, stunning that you are in so much pain, have been definitively diagnosed with AS, and are taking methotrexate and high doses of opioids but haven't been prescribed a biologic. Perhaps there's a concern for malignancy or infection (although giving you methotrexate is kinda inconsistent with that theory)? I'd press for answers and take WhiteCell's advice re a trip to Mayo or, at the very least, a good local university medical center.

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#278961 - 09/10/17 08:56 AM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: WhiteCell]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 105
Originally Posted By: WhiteCell
Can you be seen at the Mayo Clinic?

Oxy (percocet) is a stronger drug than Hydrocodone (vicodin). It is always deeply irritating when people are in pain to us Nurses. Can you tell me a little more about the doctors and surgeons who have been trying to take care of you? The pain specialist is clearly unqualified. Pain contracts imho benefit the MD not the patient. You need someone flexible who can establish a real relationship with you to bend with the ebbs and flows of pain control.

Can you describe your stomach pain. Sharp dull grinding etc? So far what you have described is a unsuccessful surgery and pain from that surgery.

When did the surgery take place. Have they repeated the CT?

Do you have fevers, night sweats?
Does the pain wake you up or can you sleep through the night 6-8 hours?

Joint pain except for your back?

Will try to come up with some recommendations.

New pain control specialist would be my 1st. Try finding one attached to an oncology unit in a hospital. 2nd would be Mayo.


Surgery took place a little over a month ago, pain is sharp dull achy it feels like someone's trying to ripping my intestines out but can't , the Dicyclomine is helping the pain that was before the surgery I was getting and still getting. The surgical pain is still their and I have a dent over my belly button from it still where the biggest incision is.

I love my rhemutologist as she is the only one who believes I was in pain and prescribed me opiods and started me on the stronger ones, that actually help and knew when their was a problem with the tramadol ect . I don't need a pain specialist.

Mayo clinic in Rochester has wronged me and thought my pain was in my head for months and I finally got a second opinion at a clinic University that is connected to a hospital and was referred to a rhem at a off-site location which was great as they found out what was wrong I am just looking for advice of what I should ask my doctor that would be a reasonable secondary treatment I didn't have great insurance when diagnosed, but now I got my work insurance back I do have multiple auto immune diseases celiacs , diabetes ect and still on Prednisone ? Maybe they will switch me to something else to replace the prednisone? I get 4 hours of sleep then I wake up to pain in my back and take my pain meds and fall back to sleep they do work really well when they kick in they just don't last long enough to keep me asleep, I did ask my doctor a while ago if I could try long lasting pain meds but I was new to being on opiods for a while and only was on it a month straight how long do you think I would not be opiod naive I have been on opiods for 3 months now I believe. I do get this deep only left knee pain that comes and goes and ankle pain in both ankles, no elbow pain I do get migraines sometimes also. No repeat ct was done



Edited by Thesnakejakw (09/10/17 09:07 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

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#278962 - 09/10/17 09:01 AM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: Winston]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 105
Originally Posted By: Winston
I find it, frankly, stunning that you are in so much pain, have been definitively diagnosed with AS, and are taking methotrexate and high doses of opioids but haven't been prescribed a biologic. Perhaps there's a concern for malignancy or infection (although giving you methotrexate is kinda inconsistent with that theory)? I'd press for answers and take WhiteCell's advice re a trip to Mayo or, at the very least, a good local university medical center.
I am currently using the second best medical center in my area I do not trust Mayo If you look at my newest comment on this thread, I have multiple auto immune diseases and on Prednisone and they are hoping the methotrexate will help the inflammation , I believe it has so far a little but I do get some nasty side effects from it. I am looking for suggestions I can ask my rhem they are good doctors and I just need to bring them a good idea on what I could do. Appointment is tomorrow..
_________________________
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

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#278967 - 09/10/17 09:43 PM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: Thesnakejakw]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1297
Loc: Whidbey Island WA
I think at this point, given treatment failures that you ask if a biologic would be appropriate. Many here had terrible pain (awake at night unable to walk etc) and found a regimen which could help. Given that your daily activies are interrupted by pain and severe pain, would your Rheum be able to start you on remicade? Given the involvment with your abdomen that would be the first choice perhaps. sustained release morphine or MS contin works for many people however it tends to be a long term medicaiton. perhpas the next step is the biologic. it would certainly make sense at least to me....
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

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#278968 - 09/11/17 03:13 AM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: WhiteCell]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 105
Originally Posted By: WhiteCell
I think at this point, given treatment failures that you ask if a biologic would be appropriate. Many here had terrible pain (awake at night unable to walk etc) and found a regimen which could help. Given that your daily activies are interrupted by pain and severe pain, would your Rheum be able to start you on remicade? Given the involvment with your abdomen that would be the first choice perhaps. sustained release morphine or MS contin works for many people however it tends to be a long term medicaiton. perhpas the next step is the biologic. it would certainly make sense at least to me....



Can remicade be mixed with methotrexate? Would it compromise my immune system more? How would I go about asking my doctor about the pain medicine I don't think I need morphine as that would be to potent and I would be doped up I would rather be in some pain then to doped up on pain meds? I did mention Zohydro once but that was in beginning? Due to me being on oxycodone 60mg with barley any doped up feeling or side effects do you think my rhem would feel comfortable prescribing me something like oxycotin? Or do you think the instant release oxycodone is something I just have to deal with I am dosing 10mg every 4 hours just to stay on top of my pain and it brings it from a 8-10 down to a 6 -7 which helps me sleep but like I said before it wears off in the middle and I wake up with terrible stiffness and pain the instant release oxycodone does kick in within 15-30 minutes I also take my carispodol with it which makes me comfortable what would be the equivalent for 60mg of oxycodone ?
_________________________
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

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#278975 - 09/12/17 09:49 AM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: Thesnakejakw]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1297
Loc: Whidbey Island WA
Yes, methotrexate can be taken concurrently with Remicade. Yes one of the concerns is immune compromised.

Have you had active infections? What is your white cell count typically?

Oxycodone is a good pain medication and typically more effective than others so if it's working I think that's a plus. I would not recommend you change that dosing.

Have you tried heat/ice or taking a very hot shower or better yet a hot tub to relieve the stiffness?

Again oxydodone seems like it's working I would not tinker with it.

A fundamental question is why has your Rheum NOT started Remicade or another biologic?
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

Top
#278976 - 09/12/17 10:47 AM Re: Pain treatment goals? And biologic or something tocombinewithmethotrexate [Re: WhiteCell]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 105
Originally Posted By: WhiteCell
Yes, methotrexate can be taken concurrently with Remicade. Yes one of the concerns is immune compromised.

Have you had active infections? What is your white cell count typically?

Oxycodone is a good pain medication and typically more effective than others so if it's working I think that's a plus. I would not recommend you change that dosing.

Have you tried heat/ice or taking a very hot shower or better yet a hot tub to relieve the stiffness?

Again oxydodone seems like it's working I would not tinker with it.

A fundamental question is why has your Rheum NOT started Remicade or another biologic?



Yes I have been taking multiple showers during day, and yes the oxycodone Is working really well, I have talked to my rhemutologist yesterday and she must go on this website as she suggested this one time as she told me before I had time to mention the current plan is not to add another medicine such as a bilogic as i believe my immune system is extremely weak being diabetic and having celiacs disease and ankylosing spondyilitis, the goal with the methotrexate is to being able to increase the dose without side effects, my rhem is waiting to see how I react long term on methotrexate I actually have the option to send her a message any weekday and they usually get back to me within hours or up to a day. She did fill my scripts 4 days early as I'm going to Canada for vacation. Yes the oxycodone is extremely effective and I feel that it is helping a lot with everything else combined such as the methetrexate Prednisone , soma, even stretching and have a appointment for a back massage in a few weeks also plus they would start me on a bilogic if this treatment plan fails as they worked really hard getting me here and another self injection for my self would drive me nuts I poke my self and give insulin and methetrexate injections it's just to much drugs I believe de

The plan with the prednisone is that when I feel comfortable going down she has me going from 10mg to 9mg she prescribed me 1mgs also besides the 5mg I was taking .it's going to take months to get off the prednisone and going to be a hard one. Trust me my rhemutologist is the best. She writes stuff down for me and don't rush me out the door the good news is my chest expansion got a little better but said my back is the same as last time when I came in measurement wise and my neck is quite curved a little bit . She did end up keeping me on the oxycodone which I am greatful for because it gets rid of most of my severe pain and I'm able to function while also on the others. I don't doubt this doctors treatment plan and i really appreciate the work she does for me as when I first was diagnosed I sent 4 emails a day and they were all responded to. She gave me off work to help my inflammation to go down but now I'm back and it's starting to get cold out and i was told I will have more pain during the winter. She did recommend 2 physical therapy sessions for me because I asked if it would help , especially with the cold that is coming . The plan with methetrexate is to get it at 1.5-2 instead of .6 every week if my stomach can handle it
_________________________
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

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