I talked with Rhem. and he confirmed my monthly cycles are causing flares. Two Dr.'s this time one wanted to put me on Steroids every month and a pill to control the cold symptoms in my hands. I want a hysterectomy. 45 Years old, I don't want another pill. If the organs are causing the problem take them out. With every flare more damage is done, you can cut out 12 flares a year. You can live without the female organs can't live without your kidneys. I should say my flares are more than joint pain, it starts with swollen glands, then comes the joint swelling and pain, then the fatigue and at the end of the cycle my kidneys are killing me and then that stops and the fatigue is still there. This process starts a week before and lasts until a week after the period. So out of 4 weeks I feel ok 1 week. I stay out of the sun, refrain from certain foods no alcohol and take the plaqunil along with Ty 3's when needed and every day at least 4 Motrin 800. He wants to wait two more months and I have to write down exactly what is happening and when it is happening and stopping. I am at the breaking point. I will be seeing my gyn and maybe she will help.
Does anyone else have this going on, I could use some help here. The Doctors want more meds which means more money. I don't have coverage for prescriptions, but I have insurance to take care of the Hysterectomy.
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asa16
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Yes I have exactly same thought I was going mad . Chest ribs and kidneys hurt. Feel so tired and bones kill me . I even have numb and burning inside mouth . Hey if u want to talk about it my email jacnk2103@btinternet.com.
My lupus always flared the week before a period too (joint pain, fatigue, sore throat). I was convinced that when I hit menopause the lupus would go into remission of its own accord and I was desperate for my menopause to happen. I am 52 and my periods were as regular as ever, and yes, I ended up with lupus nephritis.
6 months of cyclophosphamide seems to have killed off my menstrual cycle, and my GP says it is unlikely that my periods will come back now! According to the rheumatologist - my lupus has gone quiet - but has that got anything to do with the loss of my periods or is it just a result of having the heavy guns of cyclophosphamide fired at it? .... I'm not even sure.
I read somewhere (sorry, I don't have the reference) that lupus women are superwomen and have more oestrogen than so-called normal women. Unfortunately I also read that removing the excess oestrogen didn't necessarily stop the flares. There IS an oestrogen connection in lupus, but the way it works does not seem to be straightforward.
What I'm trying to say, ASA 16, is that a hysterectomy might not solve all your problems in the way you want it to. I totally understand why you want one (I wished every month for years for my periods to stop), but imagine how awful it would be if it didn't work? Sorry to sound negative - it is just that a hysterectomy is such a huge operation, it would be awful to pin all your hopes on it and then find you were still flaring regularly.
Yes, yes, YES. After years of sheer hell like yours my GP finally listened & I was given progesterone only pill injections every month which stopped my monthly cycle - and the pain/rage/frustration with them. RESULT!! Then she told me I couldnt have them anymorecos I was gaining weight and couldnt afford to take something that was helping me gain more weight! Eventually she did ref me for a merina coil which has also halted my periods - at least it has for a year so far. I hope I never have to go back to those days!!
Hope they find you a workable solution really soon.xx
Hi, I too am affected by my menstrual cycle but I kept thinking I would be nearly finished them as I am 49. I think a hysterectomy sounds too drastic but maybe the pill would be a good idea. After realising that it seems to be happening to others too I will now discuss this with my GP. What a great site this is for realising we are not alone.
About 3 years ago my periods were so irregular and frequent (but not heavy) that I went to my Dr and he prescribed the mini pill to regulate things which it did. 12 months later I had a stroke. I don't smoke, not overweight, BP excellent, they tell me that being on the pill was a significant risk for someone with Lupus. Now I can't even have a coil. I can see why you don't want any more pills but I am not sure a hysterectomy is the answer either. Now ironically I am pre menopausal (just turned 43) and not had a period for 5 months but not allowed HRT for symptoms and now take Calcium D3 to protect bones. I recovered well from the stroke with no lasting symptoms but I wish I had never decided to take the pill. I hope your gynae can help x
I too hope that you can get some help for this, and like others have said i totally understand where you are coming from. my doctor has always said that my lupus is very much hormonally driven. like another person who replied i have gone into early menopause due to cyclophosphamide, now I am all over the place, crazy lupus wise and with menopause symptoms and emotionally wretched. I think i remember being told that it is extremes of hormaones that makes things more bad. I think it is really tricky to work out what is best because sometimes things that are supposed to help can wind up making things worse. Wishing you the very best of luck whichever way you wind up going. x
I agree that their is a link with hormones and flares - have a full hysterectomy is not the answer. Due to my sticky blood i cannot take the pill or hrt. I am on steriods 5mg per day which does help as well as MMF 2000mg per day. I am due to commence plaquenil again next week ( had to stop for 2 weeks due to gastro bug).
I am premenopausel - but have recently spoke to a women at a lupus meeting who is now in remission and on less medication for her lupus. Her explanation was that when she went through her menopause it was the worse 10 yrs of her life - but now she has come through it she feels better than ever.
it may be wise discussing with your gp re a small dose of steroid each day to help you through this.
My cycle was all over the place. Very frequent and heavy,I was so anaemic that I had 6 units of blood. I was then fitted with a Mirena coil,fantastic,that slowed it down.But I was then started on Cyclophosphamide and have had nothing for 8 years but menopausal probs!!! Wish these hot flushes would stop, I do not smoke nor do I drink alcohol and drink only de caf tea and coffee,but I do drink gallons of green tea.I shouldnt moan as I suppose mega hot flushes are much better than a flare up as they are less frequent.
Thank you everyone for your helpful comments, I know it is radical, but at the moment it sounds so good!!! I will probably try the steroids and see where that leads. My husband is very worried about steroids. His father took them daily and it really screwed him up.
Back at work and, I am very tired and I think for lunch I will take a nap.
I do have a question on vitamins, I take just a regular multi, would anything else help with the fatigue. I have to work and this is becoming a problem.
I see the rheum in November so I will talk with him at that time or if it becomes to bad, I'll place a call and start the steroids.
Thank you again, this is all new to me and I don't like not being in control. Anyone have a suggestion on reading up on lupus the do's and don'ts. The only thing I got was a pamphlet from the doctor and it really didn't say too much that I don't know now. I know it is different for everyone but there has got to be a common thread somewhere.
As far as the fatigue goes check how much Vitamin B 12 your multivitamin has. Typically B vitamins are known to help with fatigue. It may be something to have those levels checked and maybe take some supplements. Another thing for fatigue would be water, make sure your hydrated enough, even with the tiredness from Lupus a dehydrated body is a weak body and it could also be a factor in the level of severity of fatigue you are experiencing. Believe it or not exercise will help curve your fatigue. Since my joints are just destroyed I can’t run anymore or do heavy exercise but I like to walk and that seems to really help all around. Finally, sleep is SOOOO important for our bodies since we are so weak and sleep is when our body recovers. I suggest getting a somewhat strict sleep routine to really ensure that you are getting the sleep you need.
Sadly there’s not always a lot our doctors can do for the fatigue except for change our medications or offer new ones. I personally don’t want to take anymore pills so I try to use different methods for some of these symptoms.
Lastly, how is your diet? Diet can really impact how you feel especially how much energy you have in a day. It definitely may be time to start to evaluate your eating habits and perhaps start to look for potential triggers or to knock out some of the stuff you know you shouldn’t be eating things that could be adding to your problem. If you have any questions I’d be happy to give you advice on diet and sleep or at least let you know what I’ve been doing that seems to help.
Sorry this isn't much to do with the above, but can anyone tell me much about cyclophosphamide, I'm only in my 20's and have to make the decision whether to get it or not.
My lupus is quiet recent, but I'm very anaemic with an iron count of 3, I've just had an iron infusion and also I had the novasure procedure (lining of uterus burnt away). They're hoping these will help with heavy periods, anaemia and the lupus
Hi Tan69 ...Is the novasure procedure the same as Leep surgery? I had the leep as I had pre cancerous cells but they said the surgery got it all ... My periods went back to normal flow and then flared up again ... Im now suffering badly with very heavy periods and anemia ... I am constantly on iron but iron levels are still dropping ... I had no folic acid and was 2 in iron ... it went up to 17 (which is still low) to 14 in a month ... just fed up with everything ...
Hi im not sure but since i had the operation in aug 12 ive never had any bleeding since. My iron levels have improved and its one thing less to suffer with
Well omg I am reading all these posts with my jaw on the floor & another little light bulb has popped on above my head it's like the pieces of my jigsaw are finally coming together but I am now sooooooooo angry that I have been suffering for over 23yrs with D.U.B. or Disfunctional Uterine Bleeding as my gynae likes to call it because they have no other idea what "it" is............and I happen across this thread & BINGO yet another tick in the LUPUS column and what feels like another bang on the brick wall
Since I was 11yrs old I have been suffering the most awful monthly periods so much so within 2yrs of starting them I had to have 4 units of blood!!! "but all young girls have unsettled menstrual problems to begin with & they'll settle down" this was what was trundled out to me during my high school years after every type of different pill was tried & didn't work & yet again I had to go home because I had flooded through my school clothes.....I was mortified.....this has plagued me my whole adult life but yet they still don't know what is causing it....no fibroids no endometriosis.....they have taken a stab in the dark at PCOS though that's just a guess & the treatment hasn't been successful & they can't understand why......I was on one of many pills when I fell pregnant with my son in 1998 (I did take it religiously as i was scared I'd bleed!) I had a relatively nice easy pregnancy right up until week 29 then all hell broke loose & I ended up with severe pre-eclampsia, put on bed rest in hospital - didn't work! delivered c-section pre-term at 30 weeks then I had eclamptic fit at 36hrs post delivery, then a DVT at 7-10 days post delivery, then PE at 15 days post delivery....phew!!! My baby was classed as being "small for pre-term" as well so even though he was 10weeks early he was a small 10 week-er the placenta was FULL of blood clots & he was lucky to have survived as long as he did....wow!!! anyway my ob/gyn was quite interested in me by this point (& wasn't the same one I'd had since high school) she felt there was a connection between all the events I'd just suffered and had me tested for various things all which came back negative inc. Lupus but I was positive for Antiphospholipid Syndrome & was told to take a baby aspirin daily for the rest of my life & avoid anything oestrogen related i.e. combi-pills so only take progesterone pills etc. & that was that.....monstrous periods did not stop without some sort of intervention so was put onto depo-provera injections = humungous weight gain I was already 1-2 stone over-weight anyway but wow now 5-6 stone...begged to be taken off it for this reason & was told to change my diet.......my diet has been the same!!!! I begged for a hysterectomy & was told no that no court in the land would allow it at that age so I was stuck.........either continue gaining pound after pound or bleed profusely.....it was a no win situation....my saviour came when I needed a sphenoid sinus operation in 2003 and the surgeon refused to take me while on the depo for risk of clotting!!! Halleluia I could finally get off it I was then given a mini-pill under the surgeons orders & put on clexane prior to the op. after he wanted my APS confirmed again(it was positive again) sinus op done but I refused to go back onto the depo so coils were discussed inc. a Mirena coil.........I had 5....yes 5.....before 1 finally took hold & stayed put.....for some reason my womb doesn't like foreign things in it & would expel them (painfully!!!) at various stages.......the last one stayed for about 3.5yrs...bonus!!.....anyway that takes me up to when my migraines (& now what I recognise as a lupus flare) started spring 2010.......menstrual cycle was all fairly settled (for me!) then goes haywire I start pouring with blood back to soaking through tampons & towels, doubled over with cramps, housebound for sheer embarrassment, within a month of this happening I get struck with horrendous migraines 2-3 a week no aura no warning just bang migraine, within 2 months of this starting my coil expels, neuro feels it's not a gynae prob but get them to check my hormones, gynae say no probs (wouldn't there still be hormones still in me from the coil?) anyway gynae give me norethisterat (progesterone) injections (8xwkly by my D/N's) to control the bleeding (fairly well) & refer me back to neuro who have to sort out the migraine issue themselves.....migraine issue still ongoing along with a whole barrel load of other issuse like tiredness, muscle/joint pains,skin lesions, dermographic urticaria, you name it I've probs got it!!
I was at the end of my tether last week & demanded my medical file from my surgery & will get to them bottom of this myself if I have to then I spot this thread & it was like another light bulb appearing......I knew there had to be a connection between me, hormones & Lupus (the doctors still insist it's not lupus) I want them to answer me....so why do I have to avoid oestrogen then???? why do you keep testing me for it unless you think it's there somewhere??? where do all these symptoms lead to unless I have Lupus or do I actually have ALL these different things wrong with me, in which case send me to ALL the right people instead of JUST neuro!!!!!
oooops sorry I seem to have rambled & ranted a bit there but geez I was sooo needing that!!!
Oh my gosh, heard some frustrating stories that just makes my blood boil! I always believed my hormones connected to my lupus. Remember in early 20's, 15 years before diagnosis, being on cilest (combined) pill & feeling better than ever. Wasn't on it for long.
Decided recently that I was going back on the pill, possibly the only thing that helps me. Knowing I could only take mini pill, went docs a number of times to be prescribed it for that reason & was told could only have it as a contraceptive. So finally pretended thats why I wanted it, and result is I am emotionally and physically stable like never before (though took a tough 3 months to kick in). Sad thing is, would love another baby but it means me and my family living through hell while we try and have done this before with no baby su cess. Getting on a bit now, nearly 43. May have to admit defeat. Big love to all lupies. x
I have calmed down a lot since original post. I am going to talk with the doctor about the steroids and possible Ablation.
I have to stop fighting this disease cause its not going to go away and I have to learn to be able to live with it. I have to become aware of a flare before it gets to bad and find some coping skills with this.
If it runs the same course as the last 8 months (at least) I should be going into a flare by the end of this upcoming week so I will be taking some time off work the following week and I am going to try some ideas that are popping in my head.
I used to practice yoga, not at all advance but the poses did help with stress and my back, I think the meditation also will help. Oh I forgot that part the arthritis already go to my lower back that has been rebuilt with rods and screws.
I just have to get in the frame of mind that this will not rule my life, I will have to make some changes but I ultimately will be the one deciding to either let it keep me down or find ways of dealing with it and managing a good life.
Thank you all, this is a great place to vent and get ideas on how to manage this.
Had lupus for 11yrs my flares are getting worst during my monthlys i end up being in bed 2wks out of a month. I too have been considering having a hysterectomy..
I have this happening to me as well, along with headache, gagging like i am going to vomit, lower back and neck pain, cramps in legs, hands, feet, and possible dehydration. I too have noticed it seems to be around my menstrual cycle. I have just recently been having more than one or two ,almost periods, a year for many years. I have been doing accupuncture and chinese medicine and it was helping me alot. I took 2 months off from Accupuncture and I am not doing well and this cycle has been happening. I hope my Dr knows something about this as I have an appointment this month. ( I just started the same med about 1 1/2 months ago. not fun adjusting to that one)
Same goes for me i am having this symptoms and flare ups whenever i will have my monthly period (before and during) since i was 23 and now i am 29.. Its very hard to live in such pain but rather than drinking tons of med i decided to let it be. (Just being use to be in pain through out ur life) and drink pain meds only if it's too much pain yo handle.
I see this was posted 4 years ago, but I'm going through the exact same thing. I'm only 31, I've had a tubal, but did you ever find any resolution?
Hi.. I live in Ohio USA, and yes I have the same problem as you do. They tell me because I am 41- going on 42, that the Thyroid has alot to do Lupus, which it does. The problem is because of that and I already take 157 MG of Levothyroxin (Substitute For Snythroid) they don't want to increase it because I am already on Coumadin( Warfarin) for Blood Clots that I had last year, and my cycles are awful because it thins my blood and then I have my cycle and it's murder!! I'm in such pain and such fatigue can't hardly move around because my muscles seize up and I get migraines. I take 800 MG Ibprofen, plus 2 Immune suppressants, and the Calcium Pills and Vitamin D 50,000 units 1x a week, Fosamax 325 MG 1x a week also for Bone Building Material, since the Cell Cept that I take is awful, and the Plaquenil that I take 2xs a time a day. My insides feel like a blended milkshake, I know your pain, hang in there though. I have found that lots of Meditation ( praying) helps keep my calm, so not as much tension as I had, that helps also. Massages are fantastic keeps the lymph fluid moving which is key and no caffeine. I tend to hurt more when I have chocolate and caffeine drinks... So strictly no Caffeine, very little chocolate ( one peanut butter Cup verses 4) lmlol.. Very little Bread, and starches and Beef they also cause bloat and inflammation, very little salt, no processed anything. Hopefully you feel better soon, the biggest thing is that your not alone. God Bless you and keep the faith, I have and I have almost died 3 times. Good luck to you.
Ladies, thank you so much for sharing! I am also from the US and have been struggling with serious hormonal issues the majority of my life. Although I am only 26, I too have considered a hysterectomy just for the possibility that I would feel like myself again. In particular, the year before I was diagnosed with lupus (2 years ago), I had my period for 6 months straight. I was thankfully not anemic from this, but my calcium and my vitamin D levels were all but missing in my blood tests when I went to get this issue fixed.
It took a ministroke for my doctors to come to the conclusion that I had lupus, although I have many symptoms of MS (though the lesions on my brain are absent). Being on plaquinil and heavily exercising has helped a lot with my symptoms. However, it seems that stress is my number one cause of flares, and my period is the second. I have talked to my doctor about this but he has yet to give me any help in this area. Would going to the gyno be of any help in this area? And would it be worth trying a contraceptive first?
I was certain that early use of contraceptives caused a lot of these issues with my uterus, but now I'm really wondering if I simply had lupus the whole time.
Hi I don't know whether you are still about HU but I have only been about a couple of years ,I have recently had a bleed 15 months after my coil was removed and it lasted 6 days and was hourendous just like they used to be,I could barely walk and spent most of that time in bed or in the bathroom, I am waiting to go for tests to see if I have any cancers but I was wondering if you had your hysterectomy and how you are now !
I have the same issue and no one understands. I like to pretend, for the most part, that this disease doesn't control my life. But, during my cycle it makes itself known, and also during my pregnancies. I literally feel pain in every joint of my body. The cold and numbness in my fingers and toes is unbearable at times. My husband gets very frustrated by the fact that I don't feel like being out and about during these flare ups. I almost can't take the fact that I feel like such a burden.
Hi will i have been diagnosed with lupus about 4 months now an yesterday my period came down n for da very first time it's pure n like carzy never had it happen before and am scard because it hurts so much on my left lower adbomal can someone please tell me wats go n on there do i need to see my doc about it cause it's very painful help 😑
I've just come across this thread...as I sit here in the run up to my period swelling up and in much pain. Last month I blacked out. Trying not to do that again. I did wonder why I was getting shocking headaches for about 3 years now before each period. The menopause takes such a long time to come - I'm 50 now, you'd think there would have been some progress. But no, the rollercoaster continues.
Anyway really appreciate the report backs and that the mini pill or mirena coil might help (unfortunately I'm still waiting to be tested for the sticky blood thing so it might have to wait).
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it's like the pieces of my jigsaw are finally coming together but I am now sooooooooo angry that I have been suffering for over 23yrs with D.U.B. or Disfunctional Uterine Bleeding as my gynae likes to call it because they have no other idea what "it" is............and I happen across this thread & BINGO yet another tick in the LUPUS column and what feels like another bang on the brick wall 
Flares (again)
Extreme fatigue advice. 
Flares
Heavy menstrual bleeding
