Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group No More Faith In The Medical System

Ok,

I went to my Rhumy last week, the one that I have been with for 14 years that wont prescribe anything stronger than hydrocodone and he doesnt do disability letters.

Well I got the results of my xrays and bloodwork back. My xrays shows degenerative changes in my spine.

My sed rate is 28 which isn't bad except that I usually take 20mg a day of prednisone.

I have decreasing kidney function.

My C reactive protein is 1.5

The nurse said ok, he is ready to start you on Enbrel.

I said well that would be ok except I am getting ready to go to the Dr. tonight because I have pneumonia "AGAIN" for the 3rd time in 5 months.

She was like, well you know you can't start on it with an infection, I was like No DUH! I have been trying to get well so I can get on it.

Next story, I am at the Med center, the same one I have been to for the past pneumonias. My fever is almost 101. My blood pressure is 140/100. My pulse ox is 95.
They did chest xrays.

When he came in I told him my same old story, you have my records there pneumonia, hospital stays, antibiotics, shots. I told him it was pneumonia I wanted roecephin shots and pain meds for the burning in my chest.

Well, he preceeded to tall me that I DON"T have pneumonia it is Bronchitis and it is probly viral so antibiotics wouldn't help any way, but if I would like he will prescribe me a Z pak. He said Tylenol should work well for the pain.

Needless to say I was really "pissed" off by the time I got out of there. Most likely what is going to happen is I will take the Z pak and be back there in 3 days with full blown pneumonia anyway. That is why I went to try to head it off. The last 2 times they put me on 2 HIGH powered antibiotics that didnt work what makes him think a stupid Z pak would.

I have no faith in the medical system at all anymore. my GP is good except if you are not dying it takes like 3 days to get in to see him. WHat are we suppose to do. I am so depressed, I told my husband tonight I am just "DONE" and I really am. Why can you not find a Dr. who will believe you. Tonight as usual when I asked for pain meds you would have thought I was asking for cocaine. Do these stupid Drs. not think I don't know my own body?

I don't know, would you guys please give me some suggestions or encouragement on what to do. I stay in the house 24/7 to try and not get sick. Surely there has to be Drs. out there that arent afraid to help you and believe you when you tell them things.

So like a good little girl I took my first dose of zythromax and I am sitting here with my head and my chest burning so bad that I am in tears but its ok because I can take some tylenol and that will make everything just great.

Sorry I am just rambling on, I really felt like Enbrel was my last hope, now I realize I will probly never even get to start it so what hope does the future hold for me. I CAN NOT continue to go on like this.

Lisa

Lisa I really feel for you. I just want you to know I am thinking about you. Sending you a big gentle hug.

Lisa

I'm really sorry to hear about your suffering. I felt hopeless too when I was waiting to get on Enbrel but not able to yet. It was a real testing of my patience. However, the day will finally come. Then you'll look back and realize you survive those dark ages. You'll be proud of yourself that you were so tough !

Olivia

Oh Lisa, what a mess this all is. I'm so sorry to hear you can't start on the enbrel, but have faith that you will be able to very soon.

This too will pass and we are here when you feel unable to cope with it all.

Many hugs,

Hi, Lisa:

I wonder whether there a the potential that your recurrent pneumonia is a direct result of prednisone usage. And you said that antibiotics did not help your previous episode, so it really could be viral. I would get a second opinion on the bronchitis; if you think you have pneumonia, and have had it before, you probably do have it again. Bronchitis can also present with fever, but the causes are more varied; why wouldn't they perform a sputum culture, if there is any doubt?

It is important to get immediate and correct treatment for pneumonia; do not accept the brush-off from anyone. In this situation, I would suggest going to ER with some exaggerated complaints; at least they might treat you with appropriate diligence and alacrity.

Penumonia can become very serious very rapidly, and I hope that you can get the help you deserve right away, and you are able to find better methods to treat your AS, long-term,

John

By any chance are you taking an over the counter or prescription acid blocker such as Zantac or Nexium? People who take them have a much higher incidence of developing pneumonia, that in combination with the Prednisone may be making you very vulnerable to it, and you may just have to stop taking it to be healthy enough to do Enbrel. Talk to your regular doctor about trying to taper down slowly off or to a low dose of the pred. because of the repeated lung infections.
You may wonder how you are going to survive on less pred, but if it kills you that point is rather moot. It's just like a lot of other drugs, after awhile it doesn't work its intended purpose anymore but the side effects are bad enough you feel even worse.

Also emphasize to the next (**** bad word Dr.) that tries to refuse to treat you properly for a lung infection that YOUR autoimmune disease affects your lung's and you MUST therefore be treated or you are going to march yourself to the nearest ER and report them. You have thicker, drier mucous, you don't clear infections like a normal person, and have much less chest expansion because of your ribcage being effected by the AS. At that point the (****) will look at you disdainfully and say of course you don't have Cystic Fibrosis as if he is completely deaf. Just keep repeating yourself or keep coughing on him.

Hi All,

Thank you so much for writing.

I am not taking Nexium or Zantac never have.

The prednisone is a have to because if I don't I can't even get out of bed because of the pain. It's not like I take 20mg every day. It might be 20mg two days in a row, 10mg the next...but it is always some every day.

What happened was when I had pneumonia in October it started out just like a cold, runny nose, headache then it moves to my chest. I went to the Med Center and had a wonderful Dr. who understood and said because of my compromised immune system, she was going to put me on a HIGH dose of Antibiotics. It was called Avelox (I think) 1 pill for 7 days. By the 4th day I was so sick my husband took me to the ER and they admitted me because even on the high powered antibiotic I still had a fever and was so sick. While in the hospital I still took the Avelox and they did an IV antibiotic called Roecephin 1 IV every 24 hours for 3 days. That seemed to kill it out.

The second time I got pneumonia was Dec. 26, I went back to the same Med center because they had record of the first episode. Also my GP who I love couldnt get into him for like 3 days. The second Dr. I did not like but he listened and I was started on a high powered antibiotic called Levelox or something like that PLUS I told him I wanted Roecephin injections, so we did 4 shots once every day. Even with all that it took weeks for me to get over.

So this time I go back to the same place because they have a record of my past and the Dr. is a complete goober. He said nothing showed up on the chest xray, but why when I breathe or cough you can hear that wheezing. I guess it could be a cross between bronchitis and pneumonia except I have had it so often that dont you think I would know??? Given my history he should have just pulled out the big guns because of my past and I told him all of that. The Z pak is just like candy to my immune system. I don't like big drugs, but that is what it is taking now to knock the infections out.

I don't know I have been thinking should I maybe go to an immunologist to try and rule some things out or try to boost my immune system? I am doing the best I can at taking care of myself. They all seemed stupified when I tell them I don't smoke and never have. I don't drink, do drugs. I try to eat healthy, try to walk for 30 minutes a day. I just know if I can't stay well I won't be able to start Enbrel. My biggest fear is I will be one of the 2% that dies from an infection with Enbrel.

I truly am at a loss at what to do and who to trust. I think Drs. have gone WAY overboard thinking everybody is out to get them and just wants drugs. It never use to be like this. I can't imagine having to deal with this for another 25 years. I need someone who is going to trust me and my judgement. I do tremendous reading on our condition, keep records, journals...meds so I am not stupid.

Thank you for all of your support it means so much.

Lisa

Lisa:

I really feel for you right now. My advice to you is be persistent. If you need something stronger for your pain, keep asking. It has worked for me. I didn't get pain meds for 10 months or so, then I asked my doc why he wouldn't give me any pain meds and he did the same thing as your doc- looked at me crazy and said "I never said that" but prescribed them anyway.

In the meantime, try anything and everything to feel better-

Take it easy! Shari

HI Lisa,
I can empathize with you as I have had pneumonia once this winter and I have Bronchitis again. I know in my area it has been a terrible winter for both. I took antibiotics and it did nothing for either as they were both viral. It is very rare to have a bacterial pneumonia. I ran a high fever with both pneumonia and Bronchitis and I am still coughing four months later.I have a couple of comments with regards to the pain medications. Many pain meds decrease respiratory function. Morphine is known as one of the worst.It supresses the portion in your brain which tells your body to breath deeply.When patients are in hospital and are in the dying process from cancers ,they are often given Morphine for pain . The lungs fill with fluid due to the inability to take a deep breath and cough. I know this being a nurse and also saw it first hand when my dad was admitted a week before he died from Pancreatic cancer. I was very aware when I asked to increase his Morphine ,what the outcome would be.My dad died 48 hours after the morphine was started and it was truly a blessing. However back to you Lisa, we want you too be able to move the fluid, sputum, phelm, green guck out of your lungs.Take the Tylenol around the clock and your regular meds and get these lungs clear and then think about the future with Embrel. I too am getting to the point of trying a DMARD, but I will have to wait until the flu and cold season is over before I even consider it. I also agree about the Prednisone. I am very surprised that any good doctor would order a steroid to be given in such a sloppy way/I have never heard of prednisone prescribed in this manner.I know you feel miserable right now, but I would really consider the Tylenol every 4- 6 hours and see if by taking it around the clock you can get some control of the chest pain.I also am taking a cough syrup at night to stop the coughing.I can't take a decongestant due to the Iritis and deongestants can cause IOP , so I stick to Buckley's>.Remember to drink lots of fluids especially warm drinks to help break up the thick sputum in your bronchi. I think you said your Chest X-ray was clear, so at least at this point you don't have a pneumonia.Try to keep being up and not laying down a lot so your lungs can expand as much as possible.

Best Of Luck, we will all keep are fingers crossed for the spring!

Sincerely,
Janet

Lisa, if you can get through this, you will hopefully get the Enbrel, and that is something to look forward to...it really helped me, but it is true they want you to be infection free before starting, as it works on your immune system...just cure what you have to cure now, and then go for it..I've had to stop the Enbrel and take antibiotics when I got a sinus infection...any bacteria and you must stop, cure it, and then go back on...

I hate lame docs, but just figure out how to cure yourself now, and then you can take the Enbrel and I'm sure you will have a big smile on your face within a month...I hope so...(and I don't work for the company)

Peace
Linc