So... many of you know I went to see my Rheumy last Wednesday. It was a routine appointment that ended up with her draining, what appeared to be, a ridiculous amount of fluid from my knee and injecting it with Cortisone... I have a torn meniscus & Baker's Cyst.
On Friday morning, an unexpected trip to the GP to see the Nurse Practitioner, resulted in the confirmation that I did indeed have "the dreaded oral thrush," and a rather annoying bacterial infection in my nose!
A quick trip to the Pharmacy and two prescriptions later, I was on my way home... to start my meds and rest.
By 4:00 pm, I had had an allergic reaction to one of the two prescriptions and had broken out in a rash on the palms of my hands, my arms and my legs. Back to the GP. And yes, I scratched and yes with my skin being "Pred compromised," that turned out to be a huge mistake.
From Friday night on, I kept taking the Nystatin, but stoped taking Naseptin Nasal Cream... so the bacterial infection has gone untreated. Which did not make sense to me, but GP seemed fined with that. (?)
So here's the rub... I feel like "death, warmed over." I cannot convey to you how truly shite I feel. : (
Since last Wednesday night, I am extremely fatigued, sleep 8-9 hours a night, and still have to take 90 minute naps during the day, have no stamina, energy, or interest, have constant aches and pains in back, chest, legs, arms, have a headache, lack of appetite (which is just as well as I cant eat anything anyway!), feel like my limbs weigh 1000 pounds, can't walk more than 20 feet with resting... and generally, every minute of the day, feel like CRAP.
So, here's the $64,000 question! Do you think it's...
A.) a normal physical set back caused by the trauma of having my knee drained and then injected with Cortisone?
B.) a normal physical set back caused by the fact that my body is trying to fight off a fungal infection and bacterial infection?
C.) normal physical side effects due to the fact that I'm still on high doses of PRED (45mg)
So sorry you are feeling so bad!! you have all my sympathy. The answer is, I think, E. I think Rugger may be right and you could do with a few days on extra Pred. If you don't do too many days you could come straight back down to where you were and nothing lost. Why not give it a try?
Definitely A&B and agree G. My body has reacted strongly to the stress I’ve been under over the past two weeks. Since last Thursday when I woke up stiff & achy. Spent the rest of the day with painful arm, neck and thigh muscles, moaning and groaning. So I upped my Pred Friday, pain gone, still stiff in the morning but functioning better. Will drop back to normal dose tomorrow. With all you’ve been going through, horrendously stressful, think you need a boost to control the inflammation.
I did find that with time I became more ‘Preddy’ and my body really felt done in with it all. So whilst the GCA bit improved, my body felt a bit beleaguered. Once I got down to about 15 I felt much better and slowly my muscle strength started to improve, my naps were less than 2 hours, my eyes worked etc etc.
No easy answers but infections like these are usually opportunist from your own flora, such as the thrush fungus, the Streps and the Staphs, that have discovered an environment that is conducive to proliferation and party party. Pred won’t help this of course because it is suppressing your immune system but you need it for the GCA. Every three weeks my white cells, Neutrophils, drop. If I get the nose sores I use teatree cream, not the potent essential oil, thinly applied with a finger up the schnozzle for a week. This is an unofficial treatment but I find it works. You are keeping your sugar low?? Candida loves it.
Dare I ask what has your activity level been recently, up to this episode?
Oh dear you poor thing - sounds like you are very poorly and in need of tlc. I have no idea which option might be causing your current, many, ailments, but as usual send best wishes. X
Oh, gesh! You can’t catch a break, can you? No idea why or what you should do other than follow what your body may be telling you what it needs and it seems that’s rest. Your immune system seems to be fighting attacks from multiple sources and may need you to slowwww down so that energy can be used by it. (Like when you have a cold, etc. and they say the best medicine is rest.) As your journey has been one step forward/two steps back, I would run it by your Rheumy. I hope you get to feeling better soon!
Hi Melissa I am really so sorry to hear you are still feeling so awful !!
Your question is a 'BIG' one and despite the offer of 'riches' it may not be easily solved. BUT I like SnazzyD's response which suggests it isn't necessarily 'more' Pred you need - I am also not sure increasing your dose is such a good idea at all. I am however not as medically experienced as many here who may think otherwise - but given your body is in a 'storm' I think 'rest the best' until you can ride this period through as I cannot see how you can be certain that an increase might even be counterproductive. Wish I could say something really helpful and more definitive - but just saying (without seeking an updated specialist's opinion that is) what I think I would do in your situation.
I have just got over pleurisy and have been amazed at all the pains I have had that felt exactly like PMR pains and like a flare but weren't. For the whole week last week, my OA hip was seriously playing up but yesterday seemed to calm down again.It's like all my weak spots were re-activated.
Sometimes we just have to ride it out and be patient!
This too shall pass ( or, if not, it's probably the PMR/GCA )
I think every physical or emotional stress we encounter takes a really ridiculous time to recover from. We really are hot house plants - orchids. You are doing the right thing. Resting, shutting all systems down, recovering. What you have just endured would knock the healthy around. Multiply it by 10 for us. Indulge yourself, demand nothing of yourself, watch undemanding box sets, sleep a lot. Don’t allow anyone to say, even with their eyes “ have you been on that couch all day”. Thrush brings more fatigue hurrah!
You have done a lot lately. The house hunt, the family visit, the ludicrous dog care. It was too much. You’ve done a version of the marathon and your body is telling you.
So A, B, and C and be a D and let your OH pamper you a bit.
I am quite lazy by nature and this helps. I suspect, usual you, is a ball of energy, it must be hard to reign it in but you must. 💜🎈
So sorry you are feeling so bad. Maybe you should be doing saline nasal rinses and hot showers to clean your nasal passages at least twice daily. Ever since I started keeping my nose clean I have put an end to sinus infections. Feel better soon!
That’s good advice Leilagirl! I used to have chronic ear infections, so bad they would swell and close up. They were due to an absence of wax and Psoriasis . I got a lovely old fashioned ENT man and all he did was clean out my ears every month - infection free for 2 years. Then he retired and went out to Australia, where everybody I love ends up. 😒
Mamici I’m so sorry you are having to go through all this on top of the stress of not knowing what’s causing it and what to do about it! Seems like the uncertainty is so crazy-making and confusing. When we are all so different and our disease progression and symptoms vary so much it’s hard to know what to do. Definitely we have lost strength and resilience, hard to accept. A medical procedure on your knee, a new infection, new drugs, allergic reaction, trips to the ER, all too much. As Sheffield Jane says, we are hothouse flowers, so hope you can rest in a beautiful greenhouse sorrounded by beautiful orchids and lots of delicious teas, nourishing food brought to you, and Netflix comedies.
I would ring your pharmacist if things don`t ease in case it is the other meds you are on and mixing with pred, sometimes they are more with it than doctors....good luck!
Oh dear. Definitely don't think you are being a big baby. A bacterial infections and a case of oral thrush plus pred etc etc etc. Will be having an effect for sure. It will also be sending your blood sugar all over...which reminds me that part of it could be sugar withdrawal if you have stuck to your plan everybody has had their 2penneth. You need to decide what needs addressing first. The bacterial infections and thrush need treatung. They don't like antibiotics tablets for the nose and sinuses as the vessels are so small they don't work very well. So stick with addressing thrush. Stuck to sugar bread and yeast free diet if you can. Always harder when you feel s@#t. Have a little facial steam with tea tree for the nose or a neti pit wash out. But latter advised reluctantly as you can spread infection too.
Main thing is reeeeest. Resssst. And more rest. Feel better soon. 😁🌻
Good grief, things are really bad for you and each "thing" causes more stress. My granddaughter 23 has been in hospital for nearly 2 weeks. They still do not really know what is wrong -stock answer- a virus. she gets septic showers 4 or 5 times a day. they go along with the discharge lounge for grossness. All her joints and back are sooo painful and swollen with they think arthritis. The infectious diseases over at Birmingham have been called in. One suggestion is TB. Pulse 154 temp 39 and on top of all that she is pregnant. I think she is competition with you. Anyway what I am trying to say is I think the stress is not helping me, so I fully understand how the stress you are going through will be affecting you. keep your pecker up, DO NOT tell yourself off, you are allowed to be angry with the b..... culprit.
What a huge worry for you and your family. I pray that she makes a complete recovery sharonnofolk. It must be untterly terrifying.
Dear All, I can't thank you enough for your suggestions, kind words and concerns... you guys rock, you truly do!
Please don't think me ungrateful or rude for asking your opinion and then not taking your advice, but to those who suggested I increase my Pred dosage, I just can't do it! It has taken me so very long to get to 45mg, I just can't bring myself to increase... even temporarily. I have thought about it all day and just can't justify it...
I actually now have 3 infections raging through my body (bacterial,fungal and an ongoing viral infection that raises its head every now and again). I guess these along with the stress of the knee, etc. is enough to make anyone feel like crap.
I will tough it out (I like Jane's words better, "ride the wave....") and see how I feel on a Thursday. I'll call Rheumy or GP if no improvement.
I am resting... I swear! That is all I'm doing; resting! And Netflix, Netflix, Netflix! I'm on a strick Candida diet, whilst still following my low or no anything else diet! All I'm eating is Natural Greek yogurt, lentils, eggs, organic chicken & meat, and salads. I'm so sick of yogurt!
And Just because I can't have it, I'd kill for a 🍪, 🍷, 🧀, 🍫, 🎂, 🍝!
Anyway thank you, thank you, thank. Please know I appreciate all of your comments! 😚
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Last thing is that if you have given sugar up suddenly it will make you feel crappy.
Well done Mellisa! You are doing all you can right now except perhaps getting the GP’s opinion?
Live yoghurt can be taken as a drink - might be easier.
Your infections are likely to be hitting hard because Pred is suppressing your natural immunity, so I think your instincts to remain at your already high dose are right. You will be so svelte at the end of this and it will end.
Not so much “ tough it out” more “ ride the wave”. Do you have Sky? Billions has us mesmerised - good writing.
I hope you are having a dab at the masks now and then. I am excited to see them. Ttwp ( this too will pass). Bless you. 🌼🌼🌼🌼
But sugar free drinking yoghurt. How you feeling today?
Mindhunter, narcos, stranger things. My friend enjoyed call my agent but my brain not functional enough to do another language. Even narcos would be a problem and I enjoyed it. Similar my usual fave scandinoir too much concentration.believe once these infections go you will feel better for sure. 🌻
I think you've made the right decision not to up your Pred, you have over done it recently and your body can't defend itself on such a high dose. You've been given all the practical advice and apart from seeking professional advice too lots of rest is the order of the day, it will take time though - more than just a few days - and that word patience comes to mind again - you know you won't win!
I saw Prof D last Friday for my routine appt, he went off alarming because I'd upped my Pred from 3mg to 5mg. He wasn't nasty but very firm. I told him I thought I was having a flare following a colonoscopy - it being bank holiday and me feeling awful I made the decision to increase. It worked wonders the first day and I kept on the increase until I saw him two weeks later with no further improvement at all. He lectured me on how dangerous the drug is and 'of course you will feel better on the increase it's a powerful drug- but can do untold damage to your body'. So that told me. I do have lots of other things going on so it made sense for me to listen to him. I did feel upset but have calmed down now.
Needless to say I am doing a dsns taper as he wants me to get back to 3, however long it takes, which he is happy I stay on - it is working fine. I'd been on 3 for 17 months anyway, as couldn't get lower, but felt okay on it. I know everyone's different but in my case he was right again.... I'm feeling better each day.
In your case you are very early in your illness and I found, in the first year in particular, I picked up loads of infections etc etc, it is par for the course I'm afraid. You have to believe us, we've been there. When you feel better there is no reason why you cannot do the things you like to do but be a little more choosy and pacing is the key!
I hope you feel better soon, big hugs coming your way!
Oh Mamici, my sympathy goes right to you together with healing thoughts. You chear us all up so much and I'm sure we all wish we could make it all better for you.
Sometimes, when all you can do is rest, it's comforting to know that there are many people out in the world that feel they know you, understand your pain (both physical and mental) and are thinking of you every day.
I was going to include a picture of my orchid but don't know how to. This orchid was just a few sticks after the flowers died last summer. I put it in the greenhouse and left it to rest (I actually forgot about it for quite a while). Then at the beginning of December I noticed a few shoots so I brought it into the house. By mid January it was absolutely full of blooms and still is. I'll send picture if I can figure it out.
You are having an utterly miserable time., not only GCA, high pred, infections and leg problems. I am not surprised you feel crap - all I know is when I was on high pred for GCA, I felt really unwell some days, completely fatigued in bed most afternoons, body hurting all over, even worse when I had the urinary infections, just felt grim and miserable.
I think my advice would be just rest, rest and give your body time to cope with the infections.
I promise you it will get better, Every time I saw my Rheumatologist I asked will I ever feel well again - I am now on 8mg, be it 22months later, although still massively fatigued, I do, and can see light at the end of the tunnel, and most of the hateful side effects of the steroids have gone.
This was me last year! Fungal, bacterial and viral infection all at the same time. On 30mg steroid at the time. Felt really dreadful. Had antibiotics (3 courses) for the bacterial infection which made me feel a whole lot worse. I took Colloidal Silver to help and swear this helped me get over it all. Took a while though. To echo, this too will pass. Sending you virtual love and hugs xxx
Firstly what a shame Melissa that you are still going through more problems, one after the other. I think too, well certainly from my own experience, that we can just about deal with the PMRGCA symptoms and then when other bits and pieces get layered on top of this it's almost like a pack of cards ready to fall. I suppose we can't second guess what has caused you to feel the way you do but certainly agree with others that your body is taking quite a battering at the moment and you need to just take time out to rest and recuperate, knowing that it won't last forever. Do what you can,for instance for your thrush, and just take time out for your own tlc ( we're often ,I feel, not used to doing this- certainly from my own point of view I'm more comfortable or was more more comfortable supporting others than seeing to my own needs) Sending you virtual hugs and wishing you all the best.
I read your post, oh my goodness, you make ME feel like a big whiney baby. I don't have near the symptoms you have and I complain and complain. Hang on and treat yourself kindly
Oh I HATE when I react like that to an antibiotic and the list grows of what cannot be taken! I hope that all clears up soon! A thought on the torn meniscus and Baker's cyst... after I got PMR I met with an orthopedic surgeon and my rheumy and tried surgery on the worst knee (lots of Baker's cysts always re-occuring). It did wonders - he sewed up the tear, burred away the rough bits, etc. So then I had the other torn knee done (too much mountain climbing) and that was wonderful too. I was able to run again! So then after a time I had the right shoulder done to open up space for inflammation and to get rid of "impingement". Terrific, felt great after it healed. So then I finally this Xmas had the other shoulder done and he sewed up the torn rotator cuff stuff. So I feel like a new person and I can't believe I waited so long. (Thank God for good insurance). All that said to offer up that for me I was happy I finally got at least the torn bits fixed up. Not sure if that would work for you but just to say I feel your pain! (part of it anyway)
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