Dear Pat and Don,
As a Nurse and Nurse Practitioner, I can attest that Shingles and other diseases do not take holidays.
I would put on a non-scented hydrating lotion or cream on the dry skin.
A Merry Christmas to both of you, and a Joyous New Year.
Merry Juliana
Just an update, crusty scales has fallen off most upper arm, but reddish areas where scales came off. lower arm / hand still have scabs where blisters were, but is scaling off in other areas. Wife claims pain has continued and maybe worst at times. This is 4 weeks and 3 days since rash started to appear.
Last thing PCP did was order an extended steroid taper of Prednisone 60mg (4 days), 40mg (4days) and 20 mg (4 days) to help with hand, elbow, shoulder swelling and hopefully reduce pain. Pat has completed the 60mg and 2 days of the 40mg, but has yet to notice any improvement with swelling or pain. I'm beginning to fear she will have an extended case of PHN, that Merry indicated might be a possibility being in arm that had lymph nodes removed (arm pit).
Because of Gabapentin supply in a couple days we're planning a slow taper down from the present 1200mg a day over the next 3 weeks. Unless knowledgeable people here on shingles forum think we should reconsider and request a refill.
Don and Pat,
I am so sorry, Pat, that the excruciating pain has continued. I would request a refill on the Gabapentin, as it does reduce the neurogenic pain. I would not start a taper yet. I would also request a consultation with a Neurologist who might be able to add additional medications.
Cymbalta or Venlafaxine, both SNRI antidepressants, are used quite successfully to help with Post Herpetic Neuralgia PHN. I am on Topiramate, an anticonvulsant (similar to Gabapentin) and Venlafaxine.
It takes an artist in medicine to prescribe these, and other medications, meaning, one who is knowledgeable in these meds, but also excels in listening to the patient, and elicits her problems, side effects of meds, and tapers meds accordingly.
My best wishes for a better New Year.
Merry Juliana
Merry, thanks again for the great advice. Had another PCP visit 3 days ago about Gabapentin and Percocet refills. PCP finally realized that quality of life was nonexistent refilled both, while allowing enough Gabapentin to go to 1800mg daily for another month and 10-325 on Percocet (now who was it in the beginning that said Percocet needed to be 10-325?) .
After just 3 1/2 days at 1800mg of Gabapentin and excruciating pain under control, I can see a noticeable improvement. Thanks again for your advice.
Don
Just an update of wife’s condition and time line to this point of a bad case of Shingles that might be of interest to others dealing with it.
Good news I hope she has turned corner from severe pain to lesser degree of pain, now at 6 weeks & 1 or 2 days after first signs of minor arm pain (thought to be sore arm muscles at that point). There is still enough pain she can not use arm but is able to move it some now and elevate to help reduce swelling. It still has some crusty areas and pinkish areas where crust has fallen off. Has only needed one Percocet in two days but still on 1800mg daily of Gabapentin and is now complaining about being bored (good sign I hope).
Time Line:
6 weeks & 1 or 2 days ago minor arm pain (thought to be sore arm muscles at that point).
5 weeks & 5 days ago noticed two or three small pinkish spots on arm.
5 weeks & 4 days ago arm mostly covered in rash, diagnosed as shingles at that point by Urgent Care. Still only minor pain at that point which extra strength Tylenol was handling.
5 weeks & 1 day ago started Valtrex anti-viral little later than 72 hour recommended period because of prescription error and stronger old pain killer (Vicodin) on hand from previous operation.
4 weeks & 6 days ago started Percocet to replace old Vicodin because of out of control pain.
4 weeks & 1 day ago started 300mg daily Gabapentin, gradually increasing to present 1800mg dailey (started 1 week & 1 day ago).
2 days ago noticeable difference of pain intensity with less pain control needed other than Gabapentin and crusty skin flanking nearing completion.
Starting after another 19 days planning a slow 21 day taper down of Gabapentin. Hopefully it will not be needed after that.
Wife near end of 8th week still having upper arm (bicep area), shoulder joint pain that increases to 5 pain level at times. She describes it as deeper pain not surface (skin area) pain. Thumb is still swollen and sensitive at tip (unusable) and is still shedding skin. Skin on most of arm still has pinkish areas where rash was but dead skin gone in those areas.
Question for those that have experienced shingles. Does this sound like still active shingles or example of PHN pain at this point?
Hi Don
so glad things are improving. 6 weeks sounds about right
mine took that long, and another few weeks taking things easy
w
waiting for red marks to fade . I dont remember any pain after that
Hopefully you are both on the home strate now
christine
Dear Don and Pat,
For some reason, the forum didn't update me on your last post, but I am happy Pat, that you are doing better. Complaints of boredom sound better than complaints of pain...
Any pain past the one month threshold is considered Post Herpetic Neuralgia PHN. As the pain has diminished elsewhere, I would be hopeful that the thumb area would also recover. The fingers have many more sensory nerves than the arm, and it makes sense that it would continue to be painful, unfortunately for you. Be careful of a Gabapentin taper, as you might need it for the thumb and shoulder, and biceps pain. If it gets too painful, please consider continue use of it. I use Topiramate for
1. migraine prophylaxis initially
2. Shingles pain recurrent
3. Joint, back, and neck pain
4. Neuropathy both feet
You certainly married the right caring man, unlike some of us, the first time around!
Please keep us posted!
It cheers me up to hear you both doing better. Your husband is an honorary RN!
Best Wishes
Merry Juliana
Merry,
Thanks for reply, I suspected it would be considered PHN at this point even if thumb had not yet shed the crusty skin and still skin sensitive but just wasn’t sure. IIRC the thumb was last area to develop rash, so makes sense it would be last area to clear. It will be three more days before we begin the 21 day taper (at 8 ½ week mark), if pain does start to increase we’ll definitely consider continuing or requesting a switch to Topirmate as Pat doesn’t have much faith that the Gabapentin is helping.
Can’t express enough how much your support has meant to us and many others on this forum.
Thank You So Much!
Don and Pat
Christine,
Thanks for info, it helps to hear from others with actual experience. Wife is just past 8 weeks now, we’ll definitely be looking forward to red marks fading and hopefully more pain reduction even knowing things are not the same in ever case.
Thank You, Don
Don,
She definitely will know if the Gabapentin has been helping her when she tapers down. I am by no means suggesting she switch to Topiramate. I happened to be on it for migraine prophylaxis, and realized it was helping my Herpes Zoster-Shingles Pain, and probably preventing Post Herpetic Neuralgia PHN. I used far less oxycodone during my episodes and wasn't essentially bedridden.
Gabapentin can make some people drowsy.
Topiramate in some people, including my twin, can cause a mental fog. It would be off label use BTW.
Lyrica causes weight gain and mood swings.
With medications, it is always:
Pick your poison!
Best Wishes
Merry Juliana
My wife’s 10 week update: Had to delay taper down of Gabapentin and stay at 1800mg daily, because pain started to increase again couple days before taper down was started. The thumb is still painful and swollen as are elbow, upper arm and shoulder. We just can’t figure out if the swelling/pain is from nerve damage of from lymphedema she is subject to in that arm.
Dear Pat and Don,
I just reread all your notes, Don. I must ask, Don, if it isn't too impertinent, what is or was your profession? You are excellent at recording details of Pat's progress? Also, where do you live? You are such a devoted couple.
The lymphedema is caused by the removal of the lymph nodes, causing any obstruction of flow of the lymph material. Any infective process, such as the severe Herpes Zoster-Shingles in Pat's arm certainly magnifies the problem.
I would suggest that you ask your physician for a referral for Occupational or Physical Therapy for Compression Therapy, Massage Therapy, and Exercises. These modalities can be extremely beneficial in reducing and managing the lymphedema. The therapist should have the resources to help Pat and you, Don. Obviously, you both know that with the edema or swelling comes increase pain. I certainly would stay on the Gabapentin at this stage.
As you already know, Pat's melanoma predisposed her to Shingles in the same area.
As an amusing side note, as you may or may not know, I have had Herpes Zoster-Shingles in my right ear every 3 -5 weeks for the past 21 years. Until I read Pat's story, it suddenly dawned on me, I had a serious right sided head injury two years before I developed Herpes Zoster-Shingles. Talk about hitting me over the head again. LOL
I hope my suggestion helps you.
My best wishes for a continued recovery, Pat. I know how tedious it seems.
Fondly, Merry Juliana
Hi Merry,
I’m a retired mechanical/electrical troubleshooter-repairman from an industrial setting. Maybe that’s why I focus on details as they were always useful to me when troubleshooting. We live near Williamsburg Virginia.
Her PCP did mention therapy for lymphedema after shingles had cleared up. But at this point she can’t stand for anything to touch hand, upper arm or shoulder. She did have compression therapy awhile after the melanoma and lymph node removal, but she only had little pain at operation sight then. She even remembers the self massage exercises for the lymuphedema, but can’t do them yet. We’re not sure shingles process is complete yet, as she still has some skin peeling from thumb and spots up arm where rash was is still slightly visible.
Certainly sounds like your and her shingles are in previous trauma areas. As I have said before I sympathize with you on the re-occurring shingles!
Your suggestions are always appreciated, not only for time you contribute but for the knowledge and accuracy we have come to recognize.
Thank You and best of wises to you also.
Pat and Don
Dear Pat and Don,
I had pictured a mechanical engineer type of fellow, but one with a huge heart.
Obviously, as you know, the therapy has to wait until the pain is diminished.
Best Wishes
Merry Juliana
Coming from someone me who had singles and never seen it again after I've use, lysine amino acid supplements 500mg tablets 2 times a day, will help get the virus out of you, stop other outbreaks and relieve pain. also a good hint is to change up your diet as well to lean turkey, fish, chicken, veggies, and stop anything processed for a month to help the healing go as it needs too
Just completed 11th week, Pat still has pain in swollen thumb (still unusable), slight upper arm sensitivity to touch (most likely PHN) and bad shoulder joint pain (when not in a particular position). The shoulder pain does not seem to fit PHN (in my unprofessional opinion). Just completed 5 day application of Mupirocin antibiotic Oinment 2% to thumb/hand area incase swelling was from bacterial infection with no change to thumb area or shoulder pain.
Was wondering if there is any chance shingles or PHN could have inflamed Bursa in shoulder? We just today found a position in a recliner that can allow her to properly elevate arm longer than short periods without severe shoulder joint pain. We also started routine ice pack treatment of shoulder (Bursa area) with hope of helping if bursitis related. Note: she cannot tolerate NSAIDs to help with inflammation.
Any advice is appreciated….. Don
It makes sence than the shoulder could be bursitis or rotator cuff . If it persists best to go in for xray and catch it quickly to get it under control.
Hi Don or Pat,
Has Pat had shoulder pain before the shingles? Does she have an orthopedic surgeon she can see? I would schedule a visit with an orthopedic surgeon as soon as possible. Shoulder pain usually doesn't improve on its own, and is difficult to figure out. It certainly is painful. Hope for a cure is correct in the need for an imaging study.
Sometimes fluid can be drained from an inflamed bursa or corticosteroids can be injected into an inflamed joint with excellent relief. I had a shoulder injection done twice with Excellent relief.
Best Wishes
Merry Juliana
Hi Merry,
Pat did not have any shoulder problems before shingles and nothing to cause a problem during. It just seems to have manifested itself during the shingle/phn process. She doesn’t have an orthopedic surgeon, but that could be arranged. I had a routine doctors appointment today which is Pats doctor also, she indicated they could request imaging (X-ray and up to MRI if needed) and there was a doctor with their practice that can do the corticosteroid injection such as you suggest.
Thanks to hope4cure and you for great suggestions. If we don’t see improvement shortly we will certainly head in the direction both of you have suggested.
Thank you, Pat and Don