I need Angels now

I’m going to urologist today. My urinary bleeding has gotten worse! Since all my medicine was used for urinary pain, I’m all out! Had worse flare up last night! With new Georgia law I’m not allowed to get meds for a week! I’ve never had major pain like this!please let everyone know at times nothing will stop the pain! Lord help me!

I hope you get some answers, or at least on the right tracks to an answer, from the urologist. Thinking of you and wishing you a good appointment.

The urologist needs Catscan to be sure. He suspects bladder disease or cancer. He told me that Methotraxate can cause bladder cancer. The reason I suspect it also is that Thursday is when I take it. Thursday night was the worse flare up I ever had!

My thoughts and prayers are with you, TOP, for a diagnosis that is not so scary as cancer. But, I can tell you my sister-in-law had urinary bleeding that was cancer and it was removed without any problems and her bladder is intact. That was a few years ago!

I sure hope that cancer is not in your stars! You have been through so much. When do you have your catscan? Please keep us informed. Hope your pain levels are at least getting tolerable, sending you hugs!

What happened when I went to the urologist was scary. The pain was so intense I lost my head! I screamed for pain relief! They husseled me out fast. I acted liked a drug crazed idiot! My conclusion on all this came to me the next day. I was out of Tramadol. When I was first prescribed Tram, I was told that it was great for pain and non- addictive. They have researched this and now they find it addictive as an opiate! When I got Tram back no more pain, very little blood in urine. Almost like everything is getting better. A false sense of hope! Anybody else had this issue with Tram?

Yes. that is why is being classed as a class 4 in many markets. Tramadol also causes pretty severe mental illness. All of its cousins are off the market for the most part including Stadol. Pain treatment causes pain just as frequently as the disease itself. That's why if the med doesn't treat the disease, you are best to avoid it.

I've heard all the reasons, justifications, rationalizations and all the excuses for years. It NEVER turns out well and the short term gain is not worth it. There are some associated conditions with PsA where pain treatment is important, but very few.

Tired of pain said:

What happened when I went to the urologist was scary. The pain was so intense I lost my head! I screamed for pain relief! They husseled me out fast. I acted liked a drug crazed idiot! My conclusion on all this came to me the next day. I was out of Tramadol. When I was first prescribed Tram, I was told that it was great for pain and non- addictive. They have researched this and now they find it addictive as an opiate! When I got Tram back no more pain, very little blood in urine. Almost like everything is getting better. A false sense of hope! Anybody else had this issue with Tram?

I agree, tntlamb. My husband has been on so many pain pills of and on all his life--I truly think he has no pain tolerance at all. At one point a doctor told him he was taking enough Tramadol to kill a horse! He's not taking as many pain pills anymore because his liver and kidneys are damaged. I tried and tried to tell him there are other ways to relieve pain--sometimes, yes, pain pills for the short term or in moderation are needed, but I did get him to use ice and heat and now he swears by them!

ToP, I wasn't familiar with Tramadol but a quick review of the drug literature clearly shows that bladder pain and blood in the urine and other urinary issues are known side-effects. It's a vicious circle and certainly one you don't need on top of PsA!

I see you are due to start on Enbrel. Has that started yet/do you have a date to start? Hopefully you'll start to feel some benefits quickly and that will enable you to put a plan in place with your doctors to withdraw the Tramadol.

What other pain management techniques do you use ... heat, ice, exercise/hydrotherapy? Is there a pain management clinic you could get a referral to?

Tired of pain said:

What happened when I went to the urologist was scary. The pain was so intense I lost my head! I screamed for pain relief! They husseled me out fast. I acted liked a drug crazed idiot! My conclusion on all this came to me the next day. I was out of Tramadol. When I was first prescribed Tram, I was told that it was great for pain and non- addictive. They have researched this and now they find it addictive as an opiate! When I got Tram back no more pain, very little blood in urine. Almost like everything is getting better. A false sense of hope! Anybody else had this issue with Tram?

Pain management clinics in Georgia is nothing more than DEA data base. My wife and I went to one. We were told by the nurse that we needed to be screened for illegal drugs. The results if positive would be sent to the police department. You can imagine what I told them. I’m 60 and disabled and I pee for no one!

So what about the Enbrel?

My own experience with PsA is that I have to go the extra mile myself to get the mile out of my medical team. Any options for you to go out of state if you don't have confidence in your local care?

I'm a few years younger than you but hell I'd pee for anyone if they could help me, preferably before I have to resort to a mobility device to get around, which feels pretty soon in my future. A friend of mine gave me a very valuable bit of advice a while back ... principals can be very costly.


Tired of pain said:

Pain management clinics in Georgia is nothing more than DEA data base. My wife and I went to one. We were told by the nurse that we needed to be screened for illegal drugs. The results if positive would be sent to the police department. You can imagine what I told them. I'm 60 and disabled and I pee for no one!

Thanks Jules, I’ve already been using a mobile device. In 5 to 10 years I will be parapeligic. We are getting the house ready.

Tired of pain, in trying to find ways to answer your posts asking for emotional support, I'm also trying to understand how you're getting on with the only medication (Enbrel) that you've mentioned which will actually treat your disease and, hopefully, extend your mobility for as long as possible.

As you've avoided the question twice I can only assume you aren't pursuing this treatment. Good luck with the Tramadol.

You are soon to have a problem T-O-P, you may already but haven't connected the dots. You can only have 5 renewals of Tramadol per six months and each counts towards your total "morphine equivalent units" per year that a non-pain specialist can prescribe (about 160 in most states as the rules are made by the docs not the DEA). You will be very limited for any medications for break through pain. Going to multiple practitioners won't help, and ERs can no longer prescribe. The bottom line is you may have to learn to pee for a pain specialist.

I can't imagine peeing blood pain wise, I'd sure be looking for answers. Tramadol would be at the top of the list.

So if you aren't taking any meds for your PsA what are you doing in terms of PT or exercise to keep things at bay? Have you ever met with a phsiatrist (Physical medicine and rehabilitaion specialist) to work out a plan? (they can also prescribe pain meds) Attacking it from that side may be of great use.

I just got off the phone with my Granddaughter who has very severe disease PsA is primary. (Deformed joints, bowel, hyper-mobility disease not to mention a brain stem injury that has resulted in multiple seizures a day) Anyway she called because she was having severe pain and need to get it under control before tennis practice. She begged me to call her PT, not the pharmacist, to see if she could get in right away. She presently has a "boot" for an ankle injury one knee brace and both wrists splinted.

Jules, right now the urologist suspects bladder cancer. My family history has many had bladder cancer and beat it. I cannot take Embril until my bladder and kidneys start functioning properly. I haven’t had a Catscan yet to be conclusive. I do meditation, exersise,hot cold therapy, and diet for five years now. I have tried everything. Some work some don’t. Plus I remember Humira, I had flare ups daily. That’s why I’m off Humira.

Tntlamb, you must be from a state that works with people that have PsA. My first Rhumy had me get X-rays, then she didn’t look at them! My second Rhumy is also a radiologist, and he concluded that my hips are to far destroyed to replace right now. They will be replaced to remove dead bone. I have muscular skeletosis, so I barely walk as it is. We moved from Atlanta to the north Georgia mountains. The pollution, and the stress of traffic sent us here. Since November, my blood pressure is perfect, my cholesterol in low 80s and my lungs are clear. It also makes a difference where you live!