Prednisone help

[thestorm]

Does anyone find that with lupus, and many other conditions, that they cannot take or tolerate Prednisone? I would like to hear from you, and as to why please. As I have taken it in step down doses for my conditions, and have had very bad experiences with it. And yet my Dr continues to use it as his go to for me whenever I present with any symptoms of lupus. Are there alternatives? Any advice of experience, explanations would be greatly appreciated. so sick, and so many symptoms I have, don't know what to do, or give up. Peace blessings thestorm😢😢

[PMRpro]

Most of the adverse effects of pred can be managed or reduced, even avoided in some cases, when you know how. I and my fellow PMR-ers are on pred as the only medication that works for years at a time - I've clocked up 10 years now. I have nothing I can put down to pred and pred alone. I have done in the past, and took action.

Pred is used as a speedy way of reducing inflammation - it is probably the most effective anti-inflammatory drug available. And that is why it is their go-to.

If you tell us what your particular problems are, then maybe people can advise.

[thestorm in reply to PMRpro]

Thanks for responding to me, first I have swollen joints, chest wall pain. COPD, lupus, fever low grade extreme fatigue, left sided sharp headache, Raynauds pain, fibromyalgia. This is to name a few. How do you manage your pred effects, or reduce them, please tell me... I know why as I said that the Dr has me on it. The side effects I get when on Pred, are, ringing in the ears, heart palpitations that mimic my lung problems, worse headache, chills, feet and hand sweating, very unpleasant mood, tremors that seem to enhance when on it. Insomnia upset stomach, altered mental state. I am only on 20 mg's in a step down dose, and not on it all the time. Meaning after the dose pak is done, then there is a long period that I am off it. This is by my Dr's scribing, not my own. So what do you all think? I greatly appreciate the advice. Peace thestorm

[PMRpro in reply to thestorm]

You seem to have managed to aquire the side effects that must be borne - I'm so sorry! Maybe it is something we suffer less of except at the start when I suspect all of us have had those to some extent but we are on pred for a long time, not repeated high to low dose tapers. 20mg is the bottom end of high dose and does cause people some grief but as our body gets used to it and we reduce the dose slowly most of those effects reduce too. Weight gain, skin problems and so on are complained of much more often.

Has your doctor told you to take a PPI or ranitidine to help the stomach problems? Alternatively many of us take pred with yoghurt and that seems to make a big difference. We all tend to get used to the bad temper - and warn people it is the pred not us! Are you on any other medication?

[thestorm in reply to PMRpro]

Hi PMRpro, thank you for the info. Dr has me on Dicyclomine and Zofran for stomach, and xanax for anxiety, I will be speaking to them about a maybe lower longer term use for the Pred. The rest of the symptoms they all blame on lupus, and the other conditions. Being in this state for 10+ years, and bounced from Dr, to Dr, by the system, it is hard to get a balance on whats what at this time. I will try the yogurt. I have no weight gain, to high of a metabolism. Thank you again for your advice. Keep up the good. peace blessings thestorm

[Crazy_Cat_Woman]

Hello Storm.... I don’t have any answers for you but just wanted to send you a virtual hug. Your symptoms sound horrible. I hope the docs find you something else that works x

[thestorm in reply to Crazy_Cat_Woman]

Hi Crazy cat, thank you for the hugs! I do want to know how you are doing to, as I have read your posts too. And as we all here do not have all the advice and answers, I am grateful for the concern and support. I do not have a ryumie Dr right now as I have recently moved to a new area, and it is very rural, there are Dr's, but they are not taking new patients till the end of August. So I try to get advice here, I do read a lot, and this hub does have some very good information. You take care too! Thank you, blessings thestorm

[Freckle1000]

I think PMRpro is right - things are worse when we're first put on prednisolone - and over time the body adjusts.

Also in agreement - unfortunately prednisolone is still probably the best immuno - suppressant about for Lupus.

However - if you believe the pred is causing the unpleasant mood - (which it can) - you could speak to you're Doctor about a medication to counterbalance that - and to help you with the generally horrible time you're going through now.

[Roarah]

What are the symptoms you are hoping to resolve? Sometimes multiple symptoms need multiple treatment protocols.

I only had prednisone once for about six months to address kidney involvement. It resolved my issue but I hated my mental state while on it. I felt very angry while on it. Although the side effects stink if it would resolved a new issue I might come across I would try again for it was effective for my symptoms at that time.

Although at the moment I feel very well, I am considering HCQ at the suggestion of my rheumatologist. She says it has great promise and it has been shown to lower a few of the type of antibodies I have tested positive for and as such she thinks it could act as a prevenitive treatment.

I hope you can find a few treatments that can get you out of this flare. Xo

[thestorm in reply to Roarah]

Hi Roarah, good to here your story, thank you for sharing that with me, can I ask what is HCQ? I am also glad to hear that you are doing well. Keep up with that. You seem to have a nak for managing all the conditions that come your way, as I do read much hear. I is nice to have people like this with advice. Keep posting, and sending peace, thestorm

[Roarah in reply to thestorm]

Thank you! I am lucky to not have typical flares like so many others. I just get organ involvement or a clot every 27 years or so hopefully. HCQ is an anti malarial drug, plaquenil is a brand name. I can not comment on how effective it might be for you and I know it is not an anti inflammatory drug, like steroids are, so it might be of any use to you but it is often a first line treatment for many lupus patients. Good luck I hope you can a treatment that helps without such horrid side effects. Xo

[Eternity6 in reply to thestorm]

I have been on pred for years n have constant nausea hair thinning hair loss some days are better than others , doesn’t and never has affected my mood although feeling sick all the time does make it difficult to concentrate I’m only on 5 mg now thank goodness I do drink a lot of water throughout the day, I wear sea bands anti sickness wrist bands , I’ve never been sick but it’s the persistent sick feeling, I just rest when I can, luckily I don’t work anymore so easy for me to take it easy, does affect my stomach I take omperazole

[thestorm in reply to Eternity6]

Yes, I can agree with you on the feeling sick often. I have IBS too, so that doesn't help me distinguish between the prednisone, and other symptoms. I to do drink lots of water, more than a fish.!!!! My hair is long, and has thinned oddly only on the left side, arm hair too, believe it or not. All less on the left.Strange goings on. I showed past Dr and he said it was nothing to worry about. As for mood, I am happy to hear that pred doesn't effect you. It can be an evil place. I do not do well as I said with prednisone and mood. I take Protonics for my stomach, and Dicyclomine. sending hopes you feel better to. Keep the faith, and the hub. peace, thestorm

[nmcleod]

hi norma here I take prednisolone daily,have done for 25years,last year I tried to cut 1mg

down every 8 weeks while trialing another drug,i got down to 2 mg a day from 10mg but lost 8 months of life.just slept and lived on paracetamol 500mg x 2 every 4 hours.eventually consultant said off new drug AZATHATHROPHINE 25MG DAILY AND BACK ON 5MG PREDNISOLENE IMMEDIATELY

IN SEPT IF I CAN CONSULTANT WANTS TO TRY AGAIN ,ON ANOTHER NEW DRUG AND CUT DOWN PREDNISOLENE AGAIN.HOPE THIS HELPS ,NORMA

[thestorm in reply to nmcleod]

Hi norma, Thank you too for your story and advice. How many milligrams have you been on for 25 years? I cannot seem to tolerate the 20mg step down. Do you think I should ask my DR for a straight 10 to 5 mg's continuous? I am calling them to ask what else to do here. Did the paracetamol help you at all? Let me know. Hope you can get a consult in Sept. Sending you hope and blessings too. thestorm

[Eternity6 in reply to nmcleod]

Every time I’ve tried to taper down a mil I flare n feel so ill , tried many times I take aza also don’t know which I hate the most the pred or the aza I’m on 50 mg would love to get off both tabs but unfortunelybthat won’t happen

[normaspc in reply to Eternity6]

Hi ruby Norma here what is aza

Please xxx

[Eternity6 in reply to normaspc]

Aza is short for azathrioprine

[normaspc in reply to Eternity6]

Thank you darling that was the drug they put me on while weaning me off prednisolene

Awful I slept for 8 months Norma cxx

[Eternity6 in reply to normaspc]

I really hate it I was on 75mg but have been on 50mg for few years now so wish I could come off it

[miccika1]

what are your maintenance medications?

[thestorm in reply to miccika1]

My maintenance meds are, Plaquenil, Advair, simvastatin, xanax, ventolin, naproxen, pain med, vitamin D multi vitamin, solon pods, lidocaine cream, combivent, bp amlodipine, and at present, prednisone step down dosing. Thank you miccika, I would appreciate any advice. Blessings thestorm

[Roarah in reply to thestorm]

Sorry I missed this you are already on HCQ, plaquenil. Sorry. Can I ask you though about lidocaine cream? It is my only pain option presently for any aches and pains due to the blood thinners I am on. Does it help you I have not yet picked it up and have never tried it. Thanks.

[thestorm in reply to Roarah]

Hi Roarah, Sorry it took me so long to get back to you. I hope you get this. And, thank you for clarifying the medication for me. My mind is a tissy at times, to many symptoms. To answer your question, using the Lidocaine 4% as needed provided a small bit of relief, and in my experience, try not to get it on your fingers it does have a numbing effect, as silly me has Raynauds, so I got numb fingers by mistake. HA, and if I may ask, being you are on blood thinners, there are several medications for pain that can be safely taken with regular monitoring from your Dr. My partner is on blood thinners and has abdominal issues, with that, comes pain and complications in the GI tract, his Dr has prescribed several pain meds over time. If you would like I can give you a list of them, if you are having trouble managing your pain. I hope this helps a bit, and I thank you very much for all your input and advice too. You hang in there, from what you write here in the hub, I read, and you have a very good handle on most of what others, us are trying to accomplish. Keep the sunny side up. Paint, water color, drawing, coloring, taking pictures of the beauty outside and all around you is a great hobby. I do this when the weather is blaaaa, and I am NO picasso, but getting into it with some books on the fine arts in Europe, and such. The beauty is breathtaking and so inspiring. That changes my mood and has lasting feelings of accomplishments. Take care, peace, blessings thestorm

[Roarah in reply to thestorm]

Thank you so much! Right now my pain is at a level I can handle but I am aging and worry about regular wear and tear in addition to lupus flares, so I may very soon be hitting you up for some ideas to suggest to my hemotologist. Right now they are treating me conservatively trying to save the big guns for later if needed. I will try the lidocaine after my next tennis match though I think. Xo

[thestorm in reply to Roarah]

I understand, glad you are still active, and Serve,. I love tennis, play one up for me. Cheers! thestorm

[miccika1]

Im not familiar with all the meds you listed, but is any of them an immunosuppressant? HQ is an immunomodulator, so it doesn't count 😀. I was thinking if you have flares and can't be on prednisone all the time usually rheumatologist prescribes an immunosupressants such as MMF.

[thestorm in reply to miccika1]

Hi miccika, Thank you too for all your help, as I said my mind is a blurrrrr these days, so my question instead of looking that up, is, what are the MMF's? I would appreciate the help in understanding. Years ago I was smart as a wip, now dumber than a door nail as the old saying here goes. Memory problems plage my often. I wonder if it has something to do with the medications I am on. Hope you are better than me and my old bones. Thank you again, peace blessings thestorm.

[miccika1 in reply to thestorm]

mycophenolate mofetil (MMF) is a standard immunosupressant that is usually added if you dont respond to plaquenil and prednisone. Especially if you have organ involvement such as lungs. If even that doesn't help then there are even stronger meds such as rituxan and Benlysta. So u want to be at minimum possible doses in order to control your symptoms. Mildest is plaquanil, biological meds are strongest.

[thestorm in reply to miccika1]

Thanks miccika, now I have a better understanding, and platform to step on with the doctors , when I do get to see one the end of August. Because of the wait time, I am trying to understand my symptoms better, as these are newer symptoms, combined together, will make an ER Dr's head spin if I need to go for urgent care. As other here have wrote in there stories, they tend to treat you differently and sweep you under the rug. I will be looking more closely at the meds you listed, and do some research on them. I know it wont help me now, with no doctor, but again, in the future. Prednisone just is to hard for me to handle on a daily basis. having eye focus issues now, so have a pleasant evening. peace, blessings thestorm

[Djlr]

Be aware that one symptom of prednisones is heart attacks – I read you had chest pain.

Especially on the high dosage, I had a friend who was in a car accident and was doing great with Lupus she had everything under control. After the car accident, she started having problems so the GP put her on 60 mg of prednisone – way too high and she started complaining of heaviness in her chest. They thought it was from the car accident, “no”.....one month later she had a full-blown heart attack !!!!

Please read all the side effects of prednisone – go over them with your doctor and other people have listed other ways and other medicines that can be used for flares, but prednisone is not for everyone and it is an “evil” medicine on our bodies.

But when we need a short quick fix, and your body “does not have any bad reactions”, it is helpful for many people.

But many of us do develop an intolerance to quite a few medications living with Lupus throughout the years as we progress that may have been tolerable to us in the past, but our bodies become sensitive to them along the way as we live with Lupus.

lupuscanada.org/living-side...

[thestorm in reply to Djlr]

Thank you Djlr for that very well put hub help! I visited the web site you sent, and yes many of those side effects are in my wheel house. Many of them! even when I am not on pred. I always speak to my Dr, about my concerns when on this medication, so he puts me on the dosing pak only. I have been hospitalised in the past while taking it, because of manic episodes. I do understand that the benefit sometimes outweighs the risk. I wish there was an alternative here, for me and many people. The help and information from other friends here in the hub at least shows me that we are all different, and yet the same. I praise everyone for there courage, stamina in the face of disease , and tolerance. support. Maybe my body is just not as tolerant to it, as you said. I am much older, less wiser, and trying to follow modern medicine. Please take care, again, thank you for the great help. peace blessings thestorm

[thestorm]

Hi all again, and now that the weather has turned on the humid button, I am completely gone. Done, out to lunch etc. etc etc. Is anyone else very symptomatic with humidity and your conditions? I am inside, with AC, but the take your breath away, rib ,chest pain like heavy weights on my left side take me down for the count. To laugh, I feel like I am on wrestlemania,ha ha. hands swollen, using lidocaine cream, feet up. joints in wrists, knees ankles, hips, neck pain, swollen, taking naproxen. using my inhalers for lung care, brain fog, I know to try and balance things out, but the barometric pressure is pulling me to the south pole. with that, prednisone, and few pain meds I don't know what else to do. No dr, again, till August. any advice because you all are all I have, and I am humbled and always inspired by your advice. Sorry to be the bother these days. you all help me more than you may ever know. peace blessings thestorm

[Roarah]

Is your chest heaviness and breathing difficulty a new symptom for you? It is often said that the only sign of a heart attack in women is the feeling of an elephant on one's chest. If this is not a regular symptom already doctor investigated I think it warrants a visit to a doctor today. Hope it is just the heat . Take care! Xo

[thestorm in reply to Roarah]

Hi Roarah, the pain has been documented by my cardiologist many times. I even had a halter monitor on me at home for a month. It tracked my heart with four point leads. The conclusion was said to be an arithmetic symptom, and NOH which I still have questions about. Gone to the ER, and blood flow is good. You are right though, that women have very different symptoms of witch can mimic other problems. In this weather I am on high alert. Hope you days are better. Thank you for the responses, it means a lot to me. peace blessings. thestorm😐