Hi all, i was diagnosed with Sweets syndrome about 4 years ago and that was after 3 years of not knowing what was wrong with me as i had so many symptoms but nit enough to fill anyone box , ie Lupus , Rheumatoid etc until i was invited to whats cslled a grand round, Doctors from mamy areas of the Northwest would gather every so often to look, examine and question strange cases, that was me but i was releived to get a diagnosis, however no one knew much about the disease and i was given an info sheet and told i would be better reading uo in the internet.
I see a Rheumatologist and a dermatologist and have tried many combinations of drugs without success. Im still on predisone 8 years on and i live with constant pain and new sores all the time, so much joint, muscle and bone pain and everyday is different, to top it off because od the long term steroids a side effect is diabetes which i now have also, not sure how the two will rub along but bit of a fight between prednisone and my blood glucose levels as i take my meds and up go my sugars.
But im sure there are worse off than me, so i try and stay positive even when ive been stuck indoors for weeks or even months sometimes.
Everyones symptoms differ and most of what ive read about sweets is contradicted by my body and how my sweets behave.
Would like to hear how others manage and hiw their symptoms differ.
Warmest regards
Jacqui 😊
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Sorry to hear that you're experiencing so many problems managing your SS. Aside from fever and skin lesions, my most problematic SS symptoms have been fatigue, muscle pain, conjunctivitis, and mouth ulcers. I do have problems with joint pain and swelling, but also have rheumatoid arthritis and a few other health problems.
The treatment combination that worked for me was prednisone, dapsone and doxycycline, but everyone's different.
Biological therapies can be particularly useful when someone is having significant problems with joint pain and swelling: helpforsweetssyndromeuk.wor...
When SS is difficult to manage it's often an indication that there's some kind of underlying condition or trigger, but not always. In my case, infection and skin damage are triggers: helpforsweetssyndromeuk.wor...
Yes i get mouth ulcers also and eye issues which now im diabetic and my sugars high my eyes are taking a double wammy, i get nodules and sores on a regular basis on my knuckles, fingers and elbows and i have very poor mobility, even the simplest task proves difficult and big flare ups put me in hospital and i normally have lesions come out all over my legs , bottom, hands and elbows, ive been lucky upto now that the lesions did not effect higher up until recently all over my chest and i know it says sweets heals without scars, this is not the case i have many scars that fade after years but still scars and sometimes the lesions tske months to heal.
I get lumps and these are strange as it almost looks like my bones are a mountain range. Also on the soles of my feet and my scalp, ive had fluid on my lungs and alsorts of other lovely ailments. I do get a little fed up that anything new that i discuss with my Doctor is always put down to my sweets and was the reason why ive spent nearly 2 months really poorly and only when i pressed that it csnt be normal or my sweets thats making me drink constantly and anything i could get my hands on that the test was done for diabetes and i was rushed into A & E as my kevels were off the chart and i was in dangerous predicament.
I never knew diabetes was a side effecr of steroids, in fact and i dont know why i never looked up side effects of steroids as all anyone says normally is it effects your bones. So im on Tablets to start, YAY MORE PILLS but if my sugars dont come down its insulin next. The only good thing if thats possible is that the diabetes has given me something else to focus on.
I am in the US , my husband is 70 and has had SS for 7 years. You couldn't be more of a mirror image of his SS if you tried! From a Dr. Round to diabetes! Right now he has lesions in his mouth and on his body. It is constant with him. We have tried every medication possible, only one left they want to try is thalidomide. We are not sure we want to go that route! He has been on 40 mg a day of prednisone for years. We have been to Mayo Clinic and NIH . He has been in a wheelchair for year now . I will pray for your health.
I feel for you both as you said your husband is a mirror image then it will be hard for you too, not only do you probably do most of the caring but have to witness your husbands daily struggle.
Ive had lots of drugs but nothing changed bit like a guinea pig ive been and the dapson i think has mot emabled me to get off steroids but has reduced the severity of lesion outbreaks enough that i can pace the floor at home and not have to go into hospital, for me that progress and wjen in hospital or seeing doctor they will always say they have no comparison to compare or knowledge of SS so you explain but to no avail. When reading up on SS and it says people migjt have only one outbreak and no scars or continuation or in remission for years and here is me and your husband dealing with it daily, i am 44 and have only ventured outside for appointmemts , i cant plan social outtings because i never know what the next day will bring in regards to soreness lumps bumos and sores and im normally passed being anyway useful by early evening so a night out is a distant memory.
I feel for you and am sad you have to go through this. Please keep me posted as to what you take and weather it works for you, I will do the same. I will put you on a prayer chain if you don't mind? The last two times Jim went to the hospital they shot him full of steroids, it all most instantly shot his suger up so now he is on insulin and gave him cataracts. We cancelled surgery 3 times for fevers, he finally had one eye done. Rolling the dice on the next one! Oh well, the fight goes on!
Bless you and thank you , i have always had poor eyesight and wear contact lenses but since the diabetes ive blirred vision and my optician said to wear a pair of reading glasses on top of my lenses, so thats what ive done just to see and be able to read etc. Steroids nasty things but seem to be the only consistant thing that helps, not completly but without them i would not be abke tondo a thing, give jim my love and your so important to him and his needs please look after yourself too as oir care givers are often forgotten. Xxx
Anakinra (Kineret) is a medication that is now being used more and more to treat persistent or difficult-to-treat SS. There is also a chronic variant of SS called chronic classical (idiopathic) Sweet’s syndrome, and there are 2 reported cases of this variant being successfully managed with the sulfa drug, sulfapyridine: helpforsweetssyndromeuk.wor...
They tried anikinra on my husband. I had to do the injections and the reaction was not good. Big welts formed each time. Had to stop. Very expensive. Always fall back to 15 mg prednisone.
Aside from prednisone, treatments for SS can sometimes be a bit hit and miss. What works for one person doesn't necessarily work for another, and reactions or side-effects can be an issue. I really hope your husband finds something that works.
Yikes. So sorry to hear about each one of you. I'm in Houston TX and broke out with SS in December 2015. Landed in hospital for 5 weeks with open wounds and very few medical people being familiar with disease or treatment. It was the worst experience in my life. It finally healed and goes into "remission" but is back again in full force. No sores but red spots and swollen plaques mostly on upper legs but spreading down my legs to feet. Also on hands and back of arms. New treatment starting involved Dapsone, Cyclosporine and now Methotrexate possibly. Received a trial injection which will determine if we prescribe pills or not. it never ends!
Ive been given all the drugs you mentioned and they say SS lesions mostly appear on the torso but mine until recently was my legs, the back mostly would be covered and ibwould feel each new one as it would be like a sharpnsting and hey oresto theres another one, also shuns and my bun.
On a regular basis i have the purple nodules and sores on knucles finger tips elbows and they are sore and take an age to heal, ulcers also large on my tounge and gums and i end uo with a lisp and drool, lovely picture im painting of myself.
Ive had also cyclosphosomide infusion treatment but no still the steroids just been on 60mg due to my sores being active and issues with my feet ( which we now know diabetes was probably to blame for them ) gradually tapering down and they let me up and down them as i need too.
I can only ever get down to 20mgs before im too sore to do anything or cope.
Too msny symptoms and lovely future complications or illness due to all these carcinogenic drugs ive had. Yayy keep smiling x
Went to dr yesterday and will know today if he puts me on Methotrexate. Took me off of Dapsone and cyclosporine so on nothing today but that won't last. Have a list of meds that we've tried in combination and individually. Of course Prednisone is the treatment of choice but that does terrible things to your body taken in high doses. Also have been on CellCept and SSKI. The SSKI drops worked the best but seriously messed up my thyroid so had to start taking Synthoid for that! As always one drugs causes side effects that create more drugs to treat. Finally got off both of those. Hands and feet are getting worse which makes daily life pretty miserable. Red papules all over legs and some on back of arms which doesn't bother me nearly like the swollen hands and feet. No immune system and no energy, losing my memory hopefully due to the most recent meds I was on
Previously had cancer treatment 6 mos before this broke out which is probably what triggered it. Never been sick before 2015 so have been lucky until then. Broker my hip after getting out of the hospital probably a result of the high doses of Prednisone. As I said it never ends but thank goodness I did not wake up dead again!! By the way, I am 65. Wondering that the average age is of the group in this blog?
Hi tjey put me on methotexate taken once a week as well as folic acid apparently thats needed too, i dis not get any releif but everyone different as my brother in law jas taken it successfully as he has rheumatoid psoriasis, although as it bottoms his immune system he has had a few spells in hospital due to infections And your right about steroids having been on high dose steroids for so long has left me now with diabetes and every druh they trial you on has serious carcinogenic side effects to look forward too later down the line. I feel for you as like me without the use of your hands and feet your pretty much at its mercy. My nodules are ever present and take such a time to heal, i get lump on the soles of my feet so when i try and stand its so painful, now im having to stab myself 8 times a day to check on my blood glucose my finger tips are even worse, even though its only a tiny prick each site is visible and sore 😢 AND AGAIN JIST HIW MANY OF US HAVE ACTUALLY BEEN SEEN BY ANYONE WHO IS FAMILIAR WITH THIS DISEASE. For the age of our chat here im 44 and have been unwell since 2009 or there about and previous to this i was never poorly, mine started after i had work done at the dentist it was a messy job with stitches and that and i was in a whole lot of pain , this is the only incident if any significance i can recall that could of been my trigger.
And your point again it is endless and everytime you start detailing how it effect you it could cover pages and pages.
Please let me know how you go on the methotrexate xx
I sure will. Getting a shot today of methotrexate. Not even sure of the dosage yet. Keeping my fingers crossed! HUGS to you - i'm so sorry any of us have to deal with this ever so mysterious disease.
I was diagnosed from a biopsy and basically told the same as you. My symptoms are just about the same as yours. My doctors never put me on prednisone. Was sent to a pain management specialist instead. I live with constant pain and new sores all the time, so much joint, muscle and bone pain most days but everyday is different. Fatigue is a huge factor for me.I'm sue the constant aches and pain contribute to the fatigue along with the Sweet's. Good luck.
Thank GOD you were diagnosed early...that most definitely is a huge factor. I was placed on Prednisone but it spread so rapidly and drastically that I landed in the hospital where I had never been before as a patient. Copious amount of drugs, antibiotics and morphine for the unbearable pain. And the worst part was there seemed to be no one who know how to treat so I became a "case study".
Its very frustrating wjen i read SS is rapidly cleared up with steroids and most people dont get recurrence of symptoms and then to add the lesions dont leave scars??
Well like you every day is different , the pain level despite taking Morphine and lots of other tablets the pain is always with me.
How we take things for granted when now as my joints , musclws amd bones are so so sore and swollen hands and fingers just trying to raise from a chair is difficult as i csnt lean on my elbows or hands as the pain is too much, same for turning im bed again as hands wrists amd elbow are too sore i get a little stuck unable to move myself, im normally at my best in the morning it like a reset button but as the day goes on i get more sore and usually by about 7 oclock im more than useless, Just recently i have jad sores appear on my chest and visible, it jas upset me as the healing is lengthy and scars visible. It never bothered me when they where on my legs as i never get them out anyway so no one could see them , my SS seems to evolve with new issues for me to deal with. It has chsnged my life in every aspects and i jave always considered myself to be mentally strong and independent person and i find it difficult to accept help from others but help is what i need, even to do the basics , but there are worse off than me im sure..
Hi everyone I've had ss since 2008 but was diagnosed in 2011 as my GP did not know wot was wrong with me after referring me to dermatologist and getting biopsy they told me I had ss up until now I was trying to stay of medication and just stick to steroid cream but it's getting me down I've had to change jobs 2yrs ago and go partime as am in constant pain with my bones in my legs,hands,arms and constantly tired all the time no energy my lessons are on my arms hands had some on my neck and face now they are starting to come out on my legs,I had mouth ulcers in my mouth for fortnight very painful I'm sure yous all agree in changes your life I don't go out much now because I'm constantly in pain with my bones my lesions leave me with terrible scares all over my body mostly my arm I'm now waiting for app to go back and see dermatologist .
Hi Cat, i too originally was hesitant abiut stetoids and unfortunately they are the better of two evils, i have tried all the medications they have to offer to try and find one that will work enough to enable me to come iff steroids, again unfortunately we have not found one, i am at the moment taking 40 mg of prednisone daily after tapering down form 60mg because i had an issue with my feet and sore were pretty active and also needed some antibiitics, also Dapson which was prescribed by my dermatologist, what Dapson has done is lessen the lesions ferocity but not stopped them.
Again the steroids have nof stopped my SS and i manage to taper down to 20mg before i become too sore throughout my body so i then put them nack upto 40mg and thr cycle continues. I too have lesions that are constant on my elbows, hands and fingers and bottom, when i have a major outbreak which everytime puts me in hospital they cover my bottom and back of legs mostly in huge numbers and then scattered a few elsewhere, i emd up losing all respect for my self as the pian and deep throbbing that accompanies the lesions is so intense i end up sitting on the hospital floor as its cool and soothes a little, or soaking my bed sheet to drape over my bum and legs, last time the aneathetist hooked me up to PCA pump to administer my own morphine when needed.
After a few days everything calms down and im left with the lesions that take such a long time to heal, i have scares the and indentations left on my body from the numerous outbreaks
Although the lesions are sore and continuous i suffer with constant pain through all my joints limbs and muscles all the time for which i see a Rheumatologist for, so i know how you feel, there is no respite and my point to all.of this is if you have to take steroids to enable a litfle relief then do so, this is why they allow me to up and lower my dosage as needed. You have obviously done very well not having to medicate but my Doctors tell me not to endure the pain but to take medication,
Hi jacqs23uk thanks for Ur reply my leisons don't sound as bad as yours yet but I am dredding them getting worse I'm waiting to see rheumatologist about my bones I think that I'll have no choice but to go on steroid s I just hope I get some relief from them take care x
This all sounds too familiar and talk about losing all respect for yourself, I would stand naked at the end of the bed while getting my wounds undressed and redressed - sometimes in front of a male nurse. Lovely but at that polnt the pain is so intense you don't give a flip. Keep praying and smiling in spite of the way the body looks which is scarred and ugly. Following colon cancer and treatment, which I'm cancer free now, by body will never ever be the same...... nor my life!
Thinking about each and every one of you and know we all can relate on various levels, none of which are pleasant.
I am currently having a flare up, I was on anti depressants because of misdiagnosed as depression I have recently weaned myself off those but here in South Australia Adelaide its pretty well unknown, I get fatigued nausea a feeling of burning around the joints and muscles and upset a lot by it as I was never a sickly person I also get light headed and the sweats up or the other which is shaking like I have a chill ahhhh, I have cortisone cream for my sores which like to spread out if not caught early it seems to present itself on my hands only at the moment if I scratch myself. I don't know are some form of depression medication needed to cope with it. I also stay inside mostly close to my bed on weekends and when I get home from work I just about jump in there.
I have been given antidepressants as the last 6 to 9 months i had not been coping so well due to this life changing disease, my Gp referred me to a psychologist who believes very much in MINDFULNESS, also supported by RUBI WAX, the American comedian, i was shocked to here she had depression and was never a real liker of but she has a book 'Guide for the frazzled' and is a good starting point.
I have recently been diagnosed with Diabetes which is the main reason why i was feeling so damn awful or worse so although you were misdiagnosed being prepared for the future and learning technics that enable us to cope better can only be a good thing.
Each of us are different and will experience SS in so many different ways that i dont suppose anyone can predict if depression will effect an individual or not.
I know i was struggling to cope with my SS as i have and endure so many symptoms, however i believe my feelings of depression were more to do with the diabetes and how poorly it made me than being depressed.
Exhaustion is common with SS, sometimes i can sleep and then sleep somemore and more, as explained its not just like having the odd poor nights sleep that a nap or early night will rectify.
I too was given steroid cream but my sore or lesions are manly open sore so can only use once the healed, im not sure if it does anygood as im still scarred by the sores.
SS is a disease not well known by many so it does not surprise me to hear that its the case in Australia.
Originally i was given a print out off the internet and told that would be the best place to read up on SS.
Not everyone suffers with joint and muscle issues but for me i had these first and the lesions followed. I suffer and have done daily from the beginning with swellings of my hands and fingers so that i cant grip or bend my fingers as they are so swollen.
The nodules and lesions come out on my knucles and finger tips and creases and just to touch is excruiating.
If you have read my posts you will know how SS affects me in so many ways without me detailing it all again but im happy to chat and divulge as and when needed as all joints and muscles in my body cause me great pain.
I feel for you in that you are having to go to work whilst having these pains in your joints and muscles as well as exhaustion, its no wonder your straight to bed and a PJama queen like me at the weekend, my clothes shopping is all about the Pjamas as i dont get out much at all, maybe 10 or 12 times in the past year and most of them to medical appointments.
As newly diagnosed with SS i found keeping keeping a diary of my pains and taking pictures of my lesions lumps and bumps helped, i still get frustrated as every ailment or pain or symptom i describe to my Doctors is normally put down to my SS so keeping records helps me distinguish between the usual and not.
You will have read maybe on all our posts about the different medications prescribed and these will work for some and not others and many including me have fealt like Guineapigs because of the lack of knowledge both about the disease and its treatment.
I find to give some releif for my joints and muscles the microwave wheat pouches, they dont last very long but placing a few here and there soothes for little while at least.
I hope that reading all our posts and Michelle often posts link to articles will help you along your Sweets journey, from the minute i posted i had sone lovely heartfelt replies and its good to know we are not alone.
God bless
Jacqui xx
Sorry for the length of my reply, having lived with SS for so long now i could probably wright a book. Xx
thank you so much for this I feel so alone with it sometimes and it makes it hard on my hubby trying to understand I got a gastro bug last week well not full blown but it made its way into my system and had a terrible weekend with nausea and fatigue my skin feeling like someone rubbed chili powder on my face edge and limbs, what made me angry way back when it started which I find interesting a year nearly to the day it hit, no lesions they started a couple of years ago now its like I get the lesion and bam I am done because I developed high blood pressure the first horrible time and mis diagnosed the doctor at the time nearly got a hit from my hubby because he got angry with me not understanding how a fit person or rather healthy one can be so ill, his words were I don't see you for 5 years and you expect me to know then all the tests blah blah which found nothing because he didn't do the right tests and didn't listen So I was only diagnosed purely because a trainee couldn't figure out this huge sore that covered the top of my hand, had a biopsy and yep there she was. Because of my slightly high blood pressure I cant take anti inflammatory meds so tonight the doc said to ride it out I use to find anti inflammatory creams disguised it
What a mess hey my love and thoughts to you and all of us that have to endure this.
Bless you, before i started with symptoms i was never ill, and i never let little sniffles and the like get in my way. It was so frustrating for an age i was in and out of hospital with flare ups and attending the same Rheumatologist out patient appointments with no diagnosis, my lesions when having a flare up would cover my bottom and legs all over some would be blister like and others sores and ive several deep scars on my legs from the ones that took months and months to heal.
I get the nodules and sores all the time on my hands, knuckles and elbows and sometimes i feel like a broken record, same old same old but i am more empathic towards people and there ailments theses days as before i became ill and most people do im sure is take for granted those little things and big that we do each and everyday without thinking.
To brush my teeth, if my hands are especially swollen or many sores i struggle to grip anything so help is what i have to accept to brush my teeth, fasten by bra and cut my food and all other personel needs.
So when someone complains of pain or difficulties these days, i have genuine sympathy.
For my partner he is fantastic but i do worry about his quality of life having to do so much for me, i try and wont stop trying to manage as much as i can but this gets him cross with me amd he tells me off for doing too much as it does me more harm than good, physically anyway as mentally i need to keep trying.
As us Sweeties as we are called which i think is lovely, are a rare breed and scattered thinly about, this site is a good place to come too, i came across it a while ago then i lost it and found it again, im so pleased i did as the same old literature documented in SS is a long way short of how this disease effects us all and in so many different ways.
I know that the joint and muscle pain is what i consider my biggest issue with this disease and because people cant see my joints and muscles hurting they dont know instantly that im ill and in a lot of pain and it can get lonely as i cant ever agree to social outings in advance as i never know how i will be on a certain date or time so i find it easier to decline any offers, im lucky i suppose as ive always been happy in my own company and my other half laughs and says im the only person he knows that would be happy marooned on a desert island.
I would miss my Pug Wilson, hes 16 months old and is wonderful, weve just lost out King Charles Spaniel Ralphy who we had for nearly 12 years my heart is sad as je was such a lovely boy, Wilson is so different he a little divil, we call him the artful dodger as he does not miss a trick, ive never had a dog make me laugh so much and im so glad he with me each day follows me everywhere and is so so cute.
So please dont feel isolated or alone, i always check my messages as my partner works for himself so i take all the calls and emails etc so im always with my phone, im happy to chat about anything and everything and if mine or another's experiences of SS as documented on this site helps or you want to discuss feel free anytime,
I will keep you in my thoughts.
Love and hugs ( Gentle ones of course as we Sweeties are oftem sore ).
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