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I initially wrote this really long whine and then got so sick of myself that I deleted it. Here's the short and hopefully less pathetic version.
2 wks ago I reduced my pred dose to 6mg., and promptly began to have resp. problems.
This continued for several days so I bought an OTC epinephrine inhaler, which caused my blood sugar to skyrocket. Epi causes the liver to breakdown fat and turn it into carbs, but I didn't know that at the time.
The wheezing and tightness continued to get worse until yesterday when I developed a constant cough. I took 15 mg of pred so that I could breathe and get my sorry self to the doctor.
After a wimpy response to a nebulizer, an x-ray showed pneumonia. I was given an abx injection (and now my @## really hurts) and rx'd an abx in the levoquin class. I asked for something else b/c I've heard too many horror stories about tendon damage, but was told that I needed a broad spectrum abx b/c I'm on a biologic and have had the pneumonia vaccine and both flu shots-which means that an uncommon bug may be the culprit, like staph or MRSA.
I was also given rx's for a steroid inhaler and I'm supposed to increase my pred dose.So now all my hard work is for nothing and I'm even farther away from being able to start AP, not to mention the diabetes and hypertension will return. And I'm not sure what caused the initial resp symptoms, the pneumonia probably started to develop yesterday, but I've had the wheezing for 3 weeks. I'm a little concerned about that stupid med I took for hypertension that caused DIL, I've had the butterfly rash return twice since I dc'd it a month ago. What if it's an activation of a dormant lupus instead of DIL? Ok, this is getting long again so I'll wrap it up. I'm just so tired of these setbacks, and there isn't an angry enough emoticon for how I'm feeling. I can't start the med that I want to take and I can't stop the med that I hate.
:headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang:Nope, still not enough!
On a positive note-I have to say that I give high marks to the TexMed Clinics in TX. They are a chain of urgent care clinics for people to use as a less expensive option to ERs. I've used it twice now and been very impressed. They are clean, the staff is CAPABLE and the doctors knowledgeable. They have their own lab and x-ray setup, and I've never waited more than 30 min. to be seen. You can go online and find information on the doctors at the clinic you choose, where they studied and where they've worked, etc. You can't make an appt, it's strictly walk-in, and patients are seen on a triage basis. The difference from an ER is that someone who is pretty ill but not bleeding to death is at the top of the list at a TexMed clinic, whereas that same person could wait for hours to be seen in an ER, and then wait hours for labwork or x-rays. IMO it's a very good alternative to the ER. OK, I'm done.
Hi Linda,
Sorry to hear about your setback. Just tell yourself this is temporary. Does the prednisone help your breathing that you have noticed? It never made much of a difference for my husband but the doctors always liked to increase it whenever anything like this was going on. If you truly have pneumonia using the prednisone is a double edged sword as it reduces the inflammation but at the same time weakens your ability to fight off the infection.
Are you taking any NAC? That can be very helpful for the lungs.
I hope the antibiotics kick in soon and maybe get some other bugs at the same time.
Oh Linda,
Don't get discouraged. Getting pneumonia is no fun thing. Try to relax, forget about the steroids and destress. Rest, relax and get well.
You owe this to yourself.
I am sending well wishes your way!!Patti
Linda,
sorry to hear a bug got hold of you. It's hard to say no to the steroids, when you are feeling so terrible, but maybe once it gets a little warmer you will start feeling better. I am so looking forward of meeting you in April. Our concerts are free on Friday and Saturday evening so come and hear some good old German music by a very large choir.
You can win, it will just take a little longer and as Parisa said take some NAC, it really helps with the lung.
Eva:D
Eva Holloway
Linda,
I'm sorry you're having another obstacle in your way–that's so frustrating! Just try to stay positive, and get the rest you need to recover from the pneumonia. I was prescribed Levaquin after I had surgery in late 2008, and was freaked out about what I heard as well but, no tendon damage at all. I felt SO good on it, that it convinced me that AP could work. As soon as I got off it, my SD flared again, and within 2 weeks, I started taking Minocin. Like Parisa said, maybe the abx you were given will help kill some bugs.
You will have better days ahead of you!! Sending lots of love and support your way:)
Maria
VINCERO! Linda! VINCERO!!!
http://www.youtube.com/watch?v=VATmgtmR5o4&feature=fvw
VINCERO = I will win!!!
Wow, I didn't expect to hear from so many of you so fast! You guys are the best! I'm hanging in, not sleeping and coughing for 2 days tends to bring out my pity genes. I had severe asthma as a child, but it has not been a problem as an adult unless I have a resp infection. If it were any other problem I'd endure and not increase the pred, but with my asthma complicating the breathing problem I don't have much of a choice. I tried for the last 3 wks not to increase it but ended up here with pneumonia. It is a double edged sword, tho, I agree.
I'm worried that once the pneumonia goes away the initial resp problem will still be there, but I'll just have to wait and see. One other thought I've had is that I've got one of the flus but b/c I had the vaccines it never developed into a bad infection, but it may have weakened my immune system enough for another bug to dig in. For now I'm just going to sleep and not worry about it. Oh yeah, the doctor gave me a rx for something to help with the cough, I wasn't paying enough attention to what he said it was and now I have a bottle of hydrocodone juice. You know how I feel about narcotics, so it's going in the dumpster.
JB, thank you so much for the video, it was amazing. And thanks everyone for your kind thoughts.
Linda,
last year when I had this real bad cough the allergist gave my Tessalon 200 mg pearls. It really help and it doesn't have the narcotics in it, She gave me a couple of refills, but since I also used the NAC I only had to refill it one more time. See if you can have maybe that.
Regards,
Eva:D
Eva Holloway
[user=11]linda[/user] wrote:
For now I'm just going to sleep and not worry about it.
Sounds good!! Hate to hear about this setback–will keep you in my prayers.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
[user=11]linda[/user] wrote:
I'm a little concerned about that stupid med I took for hypertension that caused DIL, I've had the butterfly rash return twice since I dc'd it a month ago. What if it's an activation of a dormant lupus instead of DIL?
Linda, I'm also very sorry to hear about this most recent setback. :crying: I really hope the broad spectrum antibiotic clears you up quickly and you're back on the mend pronto.
I picked up on what you said above and just thought to mention to you that it might be worth getting tested with both the single-stranded (fake drug-induced Lupus) and double-stranded (real SLE) anti-DNA tests, ANA and anti-histone ABs. Testing is really the only clear way to decipher which may be the problem. In fake lupus, when the offending drug is removed, the symptoms of DILE normally resolve quickly and disappear, though blood markers for it can take a while to follow and return to normal. When I experienced DILE, I didn't get the butterfly rash and there was a distinct absence of any type of rash…the symptoms were limited to joint and muscle pain, though some folk also experience lung problems, like costochondritis, as with real lupus.
At least these labs are easy to run and should give you some conclusive answers, so you can hopefully leave this worry behind.
And, yes…my fingers and toes are still crossed for you – it's such a shame you're going through this right now, just as you were making headway, but don't let it get in the way of all you've achieved…blips happen along the way, just as they have for me and a lot of others here. They knock us back a bit and can be such a downer, but you have been doing so well and, once the pneumonia has passed, you'll get yourself back on track. Hang in there and keep the faith!
Feel well soon, Linda, and big hugs!
Peace, Maz
Man am I at my wits end with this blood sugar issue. It crashed again today. I know this is not an AP issue, but I'm really getting pretty scared. Today I was driving on the inner loop highway in SA, during rush hour, 4 full lanes of traffic, and out of the blue the road started spinning. I was 2 lanes over from the shoulder, but somehow I made it over and pulled off the hwy. I also keep sugar tablets in the car and my purse, so I immediately took some and after about 10 min the dizziness stopped, but it happened so fast that it has me very rattled. What if there had not been a shoulder where I could pull over, or what if I couldn't get over before I passed out? This is the 3rd time it has crashed since I completely dc'd all of my diabetic meds.
I believe that my endocrine system has reset the bar for what it considers low blood sugar, so I'm getting these episodes when my levels are in the 70s -80s. I read that this can happen when someone's blood sugar has been high for an extended period of time. But I am at a loss as to what to do. I can't find a balance; if I eat too many carbs my levels get too high, but if I stick to the diet the nutritionist gave me it tanks when I'm active. Almost every thing I eat that has carbs is whole wheat or complex carbs like sweet potatoes, so I don't think it should be spiking/crashing like it would if I was eating simple sugars.
I'm still at 6 mg pred but it's time to lower the dose again. I don't know what do to, lowering the dose to 7 mg is what precipitated these episodes. I'm fairly terrified as to what could happen if I lower it again. At this point I'm thinking it's best to stick to eating the complex carbs but eating more of them, but there goes the weight loss.:X
I'm seeing the endocrinologist next week but I don't know what she say. In the meantime I'm afraid to go anywhere, no only for my own safety but the safety of everyone else on the road. Any ideas, or anyone with experience in tapering pred with diabetes? Help!Hi Linda,
On your calendar it might be time to lower the prednisone but it sounds like you need to get the blood sugar balanced first. I know it's disheartening but a step at a time. Do you use the glycemic index at all? If you tolerate beans, maybe that would be a good balance as they are a source of carbohydrate but also protein at the same time. I hope you get some answers.
Linda so sorry you're having such a rough time. :crying:
I'm going to share my experience and what my AP doc told me and advised – see if anything resonates with you. I have always had blood pressure on the low side of normal. About 3-4 years ago, I would get intermittent vertigo attacks. My GP thought it possibly ear (balance) problem. Anyway, I eventually got sent to a neurologist who did lots of tests on my ears – no problem and then for an MRI on my brain – all clear. He ended up saying that it probably is that my blood pressure dips below normal when I havent eaten enough or on time and to carry sugary lollies (candy) as an emergency sugar hit. Anyway, they still kept happening from time to time. When I saw my AP doc she told me that hypoglaecemia is common with people with rheumatoid conditions and instructed me to ensure I eat every 2 to 4 hours and that I MUST have PROTEIN for breakfast. In two years, the only slight dizziness I've had is when I didnt eat lunch one day until 3pm. Other than that, I've had no more problems. I know that you have diabetes to factor in here, but wondered if there's something that you might be able to take from my experience and results. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi Linda,
So sorry you had such a scary experience today. Blood sugars as you know are balanced by diet exercise and medication. If one of these factors are off everything is off.
Lynnie was right on about a protien. Balancing a protein with a carbohydrate is the way to go. Are you eating every couple of hours?
Do you have something , a simple sugar with you at all times in case you start to crash? A piece of hard candy, some orange juice you know the routine.
I am sure you know about all of these things but just like me with the joint pain, I try to have an aleve with me most of the time in case I get sore ankles while standing on my feet all day. You know a just in case kind of thing. I know lots of folks with diabetes who always have hard candy on them for that reason. If you are loosing weight you may need to have your medication lowered. Not sure if you are on oral medication or insulin but weight loss decreases your dosage amount so perhaps you need to check with your doctor.You mentioned a blood sugar of 70 or 80. 70 is pretty low. What is your doctor telling you you should do?
I sure hope this clears up soon. Don't want you stuck in the house to long but don't want you to drive either. Sounds to dangerous.Thinking about you Linda and sending well wishes of constant blood sugars your way!
Patti
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